For those of you who may have missed this, we now have a Nurse Practitioner on board who will be happy to answer any of your questions. If you don’t have any specific questions, please also feel free to suggest any topics you’d like Rash to write about in the future and I will let him know. Don’t be shy – just ask! So who is this Rash? you might ask – check out his profile here.
Looking forward to hearing from you – you can mail your questions/topic suggestions to email@example.com or just comment on this article.
I am curious what the biggest misconception is about sleep apnea. And have you found that low Vitamin D is a source of neurological problems?
This seems to be something that many thyroid patients suffer from and are sometimes unaware of. To read more on this topic, check out the comments following Heide’s in this post, as well as Rash’s answer to her here. Feel free to post about your own experiences too – it is by sharing that we can learn from each other.
Hi! I was diagnosed over 16 years ago with chronic fatigue, Immune Dysfunction Syndrome and fibromyalgia. I have had difficulty exercising sufficiently and regularly for my heart health and weight reduction (maintenance). Do you know of others who suffer from this side effect and what they are able to do that helps with these issues while avoiding the inevitable “crash.” Thanks for any suggestions.
Nancy, Rash will be answering this question soon. I’ll let you know when I’ve posted his answer on the site.
I am curious what the biggest misconception is about sleep apnia. And have you found that low vitamin D is a source of neurological problems.
Thank you very much, Heide, for getting the ball rolling. I’ll pass that on to Rash. Meanwhile, I look forward to any other questions or topics, which I will also pass on to Rash.
Heide, interesting you question vitamin D and neurological problems. My current thyroid doctor believes the big improvement in the neuropathy in both my lower legs is due to increasing my vitamin D3 level. I thought it was due to adding T3 in the form of NDT because I started seeing major improvement when I was switched to NDT, but at the same time liquid D3 was added so it was probably both.
That’s very interesting, Lori. Thank you so much for sharing. Vitamin D levels are vital for so many things, aren’t they? I have also heard that low Vitamin D puts you at increased risk of cancer and is essential for balancing our hormones. NDT has helped Corey and I so much too! It’ll be interesting to hear what Rash has to say about this.
Hi! I was diagnosed over 16 years ago with Chronic Fatigue and Immune Dysfunction Syndrome and Fibromyalgia. I have had difficulty exercising sufficiently and regularly for my heart health as well as weight reduction (maintenance). Do you know of others who suffer from this side effect, and what they are able to do that helps with these issues and yet are able to avoid the inevitable “crash.” Thanks for any suggestions.
Thank you very much for your question, which I will pass on to Rash. I do know that difficulty with exercising is quite common in fibro and CFS, but would be interested in any tips to help with this. Do they have any idea what triggered your CFS? Were you tested for any viruses/bacteria?
PS: Nancy, I forgot to ask whether or not they tested your thyroid? You mention difficulty with weight reduction and from my reading I know that fibro, CFS and hypothyroidism often go hand in hand. Some doctors even like to put their patients on a trial of NDT (Natural Dessicated Thyroid such as Armour Thyroid) to see whether or not it helps them. In fact, the other commenter Heide is currently on a trial of this. She also suffers from fibro and CFS.
Great topic. I have been treated for sleep apnea for just over two years now. I always like to point out that women often do not have the classic symptoms, such as snoring and witnessed breathing pauses while sleeping. However, these are classic symptoms in men. Women may present with fatigue, insomnia, morning headaches, and mood symptoms. I had no outward symptoms and none of the classic symptoms, and was misdiagnosed and treated for several years for narcolepsy. I had talked to many people and doctors since my diagnosis, and the majority believed if you don’t snore, you probably don’t have sleep apnea. This is a big misconception even among many doctors. There are lots of sleep clinics popping up all over the last several years, so I hope this has brought awareness among primary care physicians who usually see a patient first for their symptoms. I was quite hypoxic when first diagnosed and now I don’t have episodes of apnea according to the reading on my machine, which is a positive result of treating my thyroid disease, and will soon start titrating down the pressure. I think anyone on optimal thyroid treatment still having problems with fatigue, sleep problems, and headaches, should have a sleep study. Not getting enough oxygen while sleeping is a scary thing.
Hi Lori. This is fascinating stuff. It’s scary that you didn’t have any of the classic symptoms as this shows just how undetected this illness can go. Your case also truly does show how there can be a connection between sleep apnoea and thyroid disease. Thanks again for sharing your experiences – hopefully others can learn from them.
I was tested for that… which, btw, my insurance didn’t fully cover as no one’s seems to, and it cost me almost 1K usd out of pocket. My other friend just had the testing done, too, and paid about the same.
If you do have it, they usually put you on a CPAP machine, which I hear works well. I just had crazy circadian rhythms from the Hashi’s/PCOS/Insulin Resistance.
I kept sleep logs and the whole bit. I had high hopes for that doc as he seemed pretty compassionate, but in the end I did sleep a few hours which gave them no results and he jumped on the “go see a psychologist” bandwagon.
If your sleep is messed up, I suggest as was suggested to me by a neuro-psych and our work nurse, pop 1 Benadryl… not 2, when you are unwinding for bed and only if you have a full night of sleep ahead of you. It usually regulates me out, again, when I get wonky.
Thank you very much for sharing your experiences. That’s a real shame that your insurance wouldn’t pay because $ 1000 is a lot of money. I’m glad you don’t have sleep apnoea though – you already have enough shit to deal with without sleep apnoea coming to join the party!
I sometimes take melatonin – up to 6 mg (usually 3 mg) – if I need a really good night’s sleep, but I know Benadryl works super well too. I won’t take synthetic sleep meds regularly as they can be harsh on your system, but sometimes you do need a little extra help to get back on track.
I am sorry to hear that. What should have happened is that you should of been screened for free. If you have it then the sleep study should be next. They should of pre qualified you and told you how much your deductible would have been. Also if you do have it then the company supplying you the CPAP machine should have told you how much money you would have to pay. Also it depends on the insurance you have as with some you only have to pay 250 dollars and some 5000 dollars out of pocket. Then you also have the 80/20 so it is hard to estimate how much it will cost. However, shame on the companies for not telling you. I would have refused to pay as they did not inform me of the price. If you have sleep apnea popping a benadryl could actually hurt you.
I have Hashi’s and taking synthroid since 2003. This treatment was adequate until about a year ago when my thyroid went hyper for about a month. Since then it seems I’ve been on a thyroid roller coaster. This seems to coincide with premenopause symptoms and for 3 weeks of my cycle I’m at the bottom of the roller coaster, with one week of nearly normal before dipping down again.
my endo is proponent of synthroid, and hesitant to prescribe ndt. doesn’t matter whether synthroid increased, the pattern remains. I hope once I am officially in menopause this roller coaster will end.
In the meantime, do you have any tips looking for a doctor who will work with me on this?
Thanks for getting back to me. If you are going through perimenopause, this is going to be so much tougher on your thyroid. I wonder whether your thyroid went out of whack when perimenopause kicked in. I know of friends who have had similar problems. My brother-in-law is also one of those peeps whose Synthroid was increased and increased, but he just didn’t notice any difference. That suggests to me that he may well need extra T3. You’re probably familiar with the fact that many of us need extra T3 to feel our best and some people have problems with their thyroid converting sufficient T4 to T3.
As for recommended docs, by your email address (which only I can see as the owner of this blog), I take it you are based in Dallas. Here is a link to Mary Shomon’s top docs – these are patient reviews of thyroid specialists: http://www.thyroid-info.com/topdrs/texas.htm.
Also, I was wondering: do you take any particular supplements and have you had your Vitamin B and D levels checked?
I forwarded your question to NP Rash too, so hopefully he’ll get back to you soon.
I’m really sorry you are going through this shit, Nancy. None of us should have to, but hormones are so bloody complicated that it seems there are many different things to look at – many docs fail to look at the whole picture.
I’ve just been through the menopause/thyroid rollercoaster. In addition to a T3/4 combo or NDT, you might look for a GYN or any doc that specializes in and/or prescribes bio-identical hormone treatment. If you don’t luck out with the ‘top doc’ list, another good way to find one in the US is to ask at a compounding pharmacy for doctors names who treat with bio-identical hormones. You are more likely to find one that way that will treat both perimenopause symptoms and your thyroid.
Excellent tips, Lori! I didn’t think of those. Thanks so much for sharing. I was actually thinking of you when I wrote about thyroid and (peri)menopause. Bioidentical hormones make all the difference in my opinion and once we move to the US they should be so much easier to get hold of. Here in Germany, it can be a bit tough, but we are lucky to even be on NDT. It won’t be much longer though before we move across the Pond.
Have a great evening!
Thanks Sarah. They really do make all the difference! When I said – ask at a compounding pharmacy for doctors names who treat with “bio-identical hormones”, I meant to say: bio-identical hormones AND natural desiccated thyroid.
Hope you’ve had a good evening!
I guess I always think of NDT as a bioidentical hormone – it’s probably the closest there is right now when it comes to thyroid hormone. I’m translating a text on cellulite right now. It’s really scintillating …
Thanks Sarah and Lori.
My endo is on your list, and I see him next month. He is a VERY busy doctor (don’t even think about cancelling you’re appt, because they’ll reschedule you 6 months later), so I may have to be more assertive when I see him. If I don’t get the attention and results I need, I’m looking for someone who is more holistic. This doc seems to look more at the labs than symptoms and in 2 visits with him, we probly spent all of a half hour in the same room. He came highly recommended, but when you are one of the “best”, everyone wants to see you.
I had my vit D levels tested by my internist last week, they came back normal although I haven’t had a chance to pick up the lab results to see what “normal” is. I have been sketchy on taking my vits regularly, but when I do it is “Alive” brand. I realized recently they contain iodine, and I think that is stimulating my thyroid, and thinking I need to find something else that doesn’t contain iodine. Some foods tend to stimulate my thryoid as well, like tomatoes. After taking the vits or eating tomatoes I feel a little tightness in my neck like my shirt collar is a little tight around my neck. I assume that is an autoimmune attack?
No problem, Nancy. I know what you mean about busy doctors. Our doctor is insanely busy, but I am happy with him, so it’s worth the wait. Good luck with your appointment. That list can be a bit hit and miss at times (my sister-in-law had a bad experience with one of the docs on the list, but a good one with another one who is now her current doc – because it’s based on patients’ opinions, it can be quite subjective, but good for figuring out things like which docs prescribe NDT).
I’d be interested to hear what your Vitamin D labs say because maybe you are just in range, but you might need to be in the 50s I think in order for your levels to be at their optimum. Both Rash and Lori have quite a bit of experience with Vitamin D. I think 50 was the magic number. Some people do experience autoimmune/antibody flares that are caused by iodine, whilst others seem to do fine on it. Both Lori and I take the same Enzymatic Therapy multivitamin as recommended by Mary Shomon and that contains iodine too and we seem to do fine on it, but not everybody is the same and some people react badly to iodine. It’s a very controversial topic anyway because some docs are all for Hashi’s patients taking it and others are totally against it, so that I do think this is one of those where you have to try it and see. If you feel swelling in your neck, that could well be an autoimmune attack. Some (but not all) Hashi’s patients find iodine can cause autoimmune flares. Check out these articles:
Also, here’s a great article on Vitamin D:
How much iodine does your current multivitamin contain? I’m thinking not more than 180 – 200 mcg, which is I believe is the RDA. Mary’s article is interesting as it explains how taking iodine supps such as kelp makes her feel ill, whilst eating foods containing iodine doesn’t affect her in the same way.
I’m not 100% sure about how and whether tomatoes would be affecting your thyroid. I read one article saying that they are rich in iodine, but I couldn’t find any more articles on this and this is the first I had heard about iodine and tomatoes. Then again, if you experience this with several foods, it could well be a thyroid attack. Do you get this with fish too? If it’s iodine that’s the culprit, one would think that fish should also affect you in this way. Otherwise, I also wonder about allergies (because many peeps with thyroid disease are also more prone to these, but then I would have thought that you might have other symptoms other than just the tightness in the neck, which – as you pointed out – really does suggest that it might be related to the thyrodi), but I’m certainly not ruling out the autoimmune attack because I think that is very possible. Maybe somebody else can also comment on this. The first Mary Shomon link I included explains it really well. Unfortunately (or fortunately for me) I haven’t really experienced such an attack and I don’t have any allergies (yes, I know I am very lucky! My thyroid doc even had me tested for them), so this is not a topic that I have personal experience with, but I have read quite a bit about the iodine controversy, including in Mary Shomon’s book on hypothyroidism.
One problem I have found in my experience is that thyroid medicine is made by multiple pharmaceutical companies. Have you not noticed how your pill either changes shape, colour or has different markings. That is because you pharmacy (Chemist for those in Europe)will buy the cheapest possible therefore u r not guaranteed the same med. Each company makes it differently with different ingredients to make the pill. I always suggest to my patients to pay the extra and get the brand name as you know you r getting 100% of the medication and it will never change. I get better and faster control.
Thanks Rash. I always check the pills when they arrive in the mail and they always have “Synthroid” stamped on them.
Once last year when I had it filled at a local pharmacy they inadvertently substituted a generic, but the mail order always sends Synthroid brand.
Actually I do too. I wasn’t sure if everyone knew that and thought maybe it would be easier to mention the specific type of hormone. Hope I didn’t confuse things.
Not at all, Lori, but thanks for clarifying. BTW: watch this space – I’m just about to publish something new and very exciting:-).
For anyone interested, I have just posted Rash’s next column and the answer to Nancy’s question on fibromyalgia/CFS and exercise (see above). In addition, Nancy you might be interested in the recent interview I did with Dr Teitelbaum as this also talks a lot about treatment for fibro and CFS.