I don’t even know where to start with my issue because its so bazaar and annoying.
Two months ago I went to see a neurologist about a weird burning skin sensation that I have had for a year and only effects the tops of my feet and hands and occasionally my entire body (sunburn sensation) without the burn … its so bad I can’t wear socks and I have to sleep fully clothed so my skin doesn’t touch which is the most insane burning sensation. The neurologist said I have small fiber neuropathy without a cause, maybe hormone related but unsure (story of my life) and given no solutions to stop this burning and actually she did no real testing to come to this diagnosis… sigh.
For the past month I have developed optical migraines that causes me to temporarily lose my eye sight in only one eye for just a few minutes (completely blind) and a headache that just won’t go away for the entire day. I have lost the sight in my (R) eye 3 times so far. I recently saw my eye doctor for glasses and a watery eye issue (same eye I have lost sight temporary) however she said my eyes (other then old) are healthy and the watering is nothing. I do see her again on the 27th and will definitely mention the blindness since I did not on my last visit (I thought it was me sleeping with my eye open) now I realize its not this simple.
Now Im having this muscle weakness that just comes from out of nowhere. This weakness leaves my arms feeling tired and just today I also developed calf cramps and hip fatigue (new) but this fatigue just destroys me for the entire day and I can not figure out why this keeps happening and YES I have been to my Rheumatologist thinking my psoriatic arthritis and medication is causing this and of course its not from the PSA and YES I brought this to my Endocrinologist attention and you guessed it not an endocrinologist issue and he told me to see my primary doctor who then sent me to the neurologist who above diagnosed me with small fiber neuropathy without a cause and maybe hormone related but not sure and Im heat intolerant thats so bad that it can make me pass out from heat exhaustion from doing absolutely nothing… not kidding.
I do have blood test for thyroid coming next month (which won’t show anything) and as usual my issues won’t be related to my hypothyroidism.
Im constantly anemic and I have no idea why and Im wondering if this is actually the culprit behind my muscle fatigue and yes I do take B12 and Magnesium and I get my D from the sun right now since its summer here.
Can anyone give me some ideas what I can ask my Rheumatologist I (see her Monday) and anything I can ask my Endo I see him next month?
Thanks in advance.
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Batty1
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Sorry to hear you have so much going on and I'm not sure I know the answers but one thing I can say.:Both vitamin D and iron deficiencies can cause masses of issues, - some of which you've mentioned. Relying on vitamin D from sun exposure alone probably isn't enough. Despite being outside every day and supplementing most of the year my levels were low end of 'normal'. It wasn't until I took 10,000 IU ( a loading dose) for 3 months, that I managed to get levels into upper range. My muscle aches , pains and energy improved massively with that. I now test privately to keep an eye on where I'm at. Iron too will cause you a multitude of symptoms if your ferritin levels are not where they need to be. I would consider trying to raise both of those as a starting point.
I don’t think I can help very much except to say that I have had so many weird and varied side effects from the excipients in tablets, not only thyroid but all sorts of medication and supplements and only realised this when stopping them. Can you recall when certain symptoms started, was it when you started taking either of your Synthroid or Cynomel? Just a thought
I do inject a immunosuppressive drug every month for psoriatic arthritis and did it 2 days before this debilitating fatigue and breathlessness hit and Im still having issues right now … anyway my Rheumatologist won’t/can’t take me off this injection because these immunosuppressive therapy is the very reason why my PSA took off in the first place when my Endo in 2016 removed my injections so I could have my thyroidectomy and the backlash was monstrous left me crippled and destroyed my health its only been a year since Ive been able to walk without aids… so unless she can come up with something better today I guess Im stuck but I definitely am going to push the subject.
You should test your vitamin D levels and start taking adequate amounts of supplements for it until your level is optimal. There are quite a lot of people on the forum who have said they lived in a place with a lot of sun and yet they were still too low in Vitamin D.
You can calculate the dose you need, once you know your current level, using this calculator:
Once you've got your Vitamin D level up to optimal you will have to continue taking it but at a lower dose to maintain your level. Otherwise your level will just drop again.
Another issue with vitamin D is that you need to take vitamin K2 and magnesium with it. Vitamin D raises the level of calcium absorbed from the diet and the K2 and magnesium help that calcium to end up in bones and teeth rather than lining your arteries.
The same comments apply to iron. If you tend to drop your level very quickly you will need to take a maintenance dose once you get your levels of ferritin and iron up to optimal (or as close to it as possible).
Although I've stopped taking them now I've taken prescription-strength iron pills at varying doses for about seven years until this year. Throughout that time I would test my iron regularly with an iron panel - usually about twice a year, although more frequently in the early years.
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With regard to your burning skin, the things that come to mind for me (someone with zero medical training) are an allergy, or an autoimmune disease.
You should check the ingredients of any prescribed drug you take or supplement you buy. The commonest ingredients that cause problems for people are acacia, mannitol and lactose, although no doubt there are others I haven't heard of. Any drugs with colours in could cause problems for some people as well.
For help on ingredients in drugs and supplements :
What about food? Do a search for food allergies. In the USA there are far more ingredients allowed in food than is true in the UK and Europe. Restrictions are far more stringent here.
Im definitely not diabetic because this is what I thought and I had my doctor run so many test and all of them have come back good. I will request vitamin test and when I mention medications being the problem Im always told nope not possible.. its crazy.
The Anemia thing is crazy because I definitely eat enough meat and Ive been menopausal for 17 years … why would I have anemia?
Some people just don't absorb nutrients well, and hypothyroidism makes it worse, as does gluten intolerance, coeliac disease, Crohn's Disease, and Ulcerative Colitis.
All the females in my family, on the maternal side, all have issues with iron and almost perpetual anaemia or low iron. So it can be genetic as well I think.
I eat meat and yet I've been low in iron or anaemic all my life.
But you might not be anaemic or low in iron. You would need a test to be sure. In the UK most iron panels will contain the following tests :
I forgot to mention in my post I have strange dime size bruising around joints (knee and shoulder) I was diagnosed as anemic last year and supplemented per doctors instructions (did not have bruising) when diagnosed last year and I have a CBC and it showed low MCHC values and RDW CV as being on the low side.
Yes I definitely need to get back to my doctor and have vitamins and Iron panel done ….. but can you tell me why I would have anemia symptoms breathlessness, debilitating fatigue randomly and not constantly?
Some people feel better on a gluten free diet - less stogy. But the real point of going gluten free is to stop/slow your auto immune disease. You don't feel auto immune diseases, well not until they damage key organs like the thyroid. Blood tests like Thyroid Antibodies (TPO) and Coeliac Serology tests can be a guide to improvements afters 3 month gluten free.
Hi Batty. You might just be taking a little too much Levo. In your last post you said you take 100mcg. Maybe just skip a few days and see if you feel better.
I am hypothyroid, anemic and low iron. I suffer with ocular migraines, muscular weakness, heat intolerance and I get random nerve sensations in my feet. I thought that I was getting enough Vitamin D from the sun as I used a tanning bed and laid out in the sun upon occasion. I went to have a blood panel run while I had a sunburn and my blood showed no Vitamin D. It is incredibly important to supplement it! I have also begun supplementing Iron (along with Vit C for absorbency) now. I cannot take Levo because it makes my eyes twitch uncontrollably, and my insurance covers nothing else. I'm only responding to validate that a lot of what you are experiencing is relatable to being hypothyroid and anemic. And since the thyroid regulates hormones, I suppose a hormonal imbalance wouldn't help matters. I wish you much luck in getting this sorted out. It is not fun to feel all of these things! Before trying new meds, I would def recommend getting your Vit D and Iron levels straight first. See if that helps things.
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high fiber diet / levo
Is it the NDT (Thailand)
