Hair loss and pain in legs. The latest symptom of my hypothyroidism?

I was diagnosed with Hashi's four years ago and was prescribed 100mcg of levo. Then about a year ago I started to get crippling pain in my lower leg when walking more than a few hundred metres, so bad that I would have to stop walking and wait for up to 10 minutes for the pain the subside. The pain would start in my right leg but if I pushed through the pain it would eventually develop in my left leg too. Exercise became very difficult as a result.

I was investigated for intermittent claudication in my legs (I am overweight with high cholesterol of 7.7) but a Doppler ultrasound did not reveal anything.

I had a possible thyroid storm last summer which also resulted in psychological problems including mood swings and irritability. I was taken to a&e where blood tests showed I had hyperthyroidism so my levo dose was reduced to 75mcg but the last few thryroid level tests show I am now undermedicted, however my endo is not prepared to increase the dose just yet as she is running some other tests (which have so far ruled out a pheochromocytoma). I also have low testosterone and suffer from intermittent bouts of tachycardia (resting pulse of 170+), excessive sweating and my usual healthy blood pressure jumps to 180/100. I am trying to lose weight but a very strict diet and exercise regime have only resulted in a few kilos lost in the last 6 months :o(

So now onto the latest symptom - the back and sides of both legs is completely bald from the knee to my ankle, exactly where I get the pain when walking. I am a 41 year old man who has a higher than average covering of body hair. My wife says it looks like I've waxed my legs! Could my thyroid be responsible? The hair loss is quite recent and I only noticed when I was investigating a sore that had appeared on my right leg.

I am quite concerned about my overall health. I have always been in good shape physically but over the last 5 years I've gained 6 stone despite careful diet and the help of a personal trainer and also now suffer from phantom pains in my arms and legs. Could my thyroid really be the root cause of all this? I need to get this sorted but the NHS is so very slow and I only get 10 minutes with my endo every 6 months or so. When I have the money I will order some private thyroid level tests.


17 Replies

  • I am not medically qualified but I do think you are underdosed. You became hyper due to a huge attack on your gland by the antibodies so you are probably hypo now, particularly as your dose of levothyroxine was reduced.

    It appears to me that sometimes doctors don't join up the dots and make a diagnosis but rely only upon the TSH which causes the patient problems. They will probably prescribe another medication for the symptom rather than a thyroid hormone.

    Overweight and high cholesterol are clinical symptoms of hypo as is loss of body hair and thinning hair. Weight is due to our very low metabolism and it should decrease when an optimal dose of hormones are prescribed. You can tick off in the link below your symptoms.

    Levothyroxine is also called T4. Our body produced T4/T3 etc and now levothyroxine has to convert to sufficient T3 in order for our body to function normally.

    The next blood test should be at the very earliest, fasting but you can drink water. Allow 24 hour gap between your last dose of levo and the test and take afterwards.

    Also ask for B12, Vit D, iron, ferritin and folate if you've not had them recently.

    Also, an antibodies attack can be reduced or halted by gling gluten-free.

    Always get a print-out of your results with the ranges for your own records and post for comments if you wish.

  • This has just been posted and may be of interest to you. We have a lot to read and learn if we want to recover :)

  • my husband is hypothyroid and had non stop aches and pains on levo and or t3

    all only cleared when he switched to NDT

    i dont think your endo has a clue esoecially since you have piled on so much weight

  • Could the aches and pains be a sign that the body is becoming 'toxic' with meds that are not being 'used' properly, maybe the 'receptors' are not working or medicine not being converted as it should - hence flooding the blood stream? I found this is what was causing me migraines and fibromyalgia. I had to stop T4 altogether and now on T3 only. Have recently had similar problems starting again, but a different make of T3 seems to have solved this for now...

  • I've just been looking at what you posted a few months ago here which actually showed no evidence of Hashi's. You're a medical mystery it seems! :) I can't see from the tests that you had a thyroid storm either...

    What I would say is that your B12 and Vit D were very low in those initial tests. I can see from other posts you've made that you're already gluten free and sensitive to fructan.

    So... Do you supplement Vit D and B12? Have they ever been tested again? What are your ferritin levels?

  • Medical mystery seems about right! I take B12 and Vit D and my levels are now normal. No idea about Ferritin - I'll ask my endo if it can be tested but I think I'll order some private tests anyway. As for the disagnosis of Hashimoto's - I saw Prof Chew on Harley St in 2013 and he was the one who diagnosed it. Quote from his letter to my Dr: "...has autoimmune hypothyroidism, additional autoantibodies in the form of antinuclear antibody and anti-gastric parietal cell antibody and vitamin D deficiency." No idea what all that actually means though.

    I don't know if I had a thyroid storm or not - it was a possible cause but never clinically determined as the A&E doctors were far more concerned about a possible heart problem (which it wasn't, although I am going to have a 24 hour 'tape' and bp done). My thyroid tests have been inadequate and infrequent until recently and my endo still just looks at TSH and free T4.

    I am mostly gluten free - a few slip ups over Christmas! I am going to have to go grain free again and give it 6 weeks to see if there is an improvement. Hopefully this will also help with the migraines which have been crippling of late.

  • If you have Anti-Gastric Cell anti-bodies you have Pernicious Anaemia and should be treated accordingly with injections. Your B12 results have possibly been skewed due to supplementation. Your leg pains are symptomatic of PA and considered neurological. Therefore the treatment regime will be different and more regular. There are guidelines - see below or go to the Pernicious Anaemia Forum here on HU and read the Pinned Posts to the right of the main page if you are on a PC or scroll down if on a phone :-)

    Also go to the main website of the PAS - Pernicious Anaemia Society - where you will find so much information - help and support.

    Go to the above link and scroll down for the neurological signs and symptoms of B12 deficiency .....

    PA could be the source of many of your problems. ( the Anti-Nuclear antibody Test is a general test for anti-bodies and not specific to the Thyroid )

    I am not a Medic - just a Hashimotos gal with a B12 issue :-)

  • This is very interesting. I will mention it to my endo. At the time of my diagnosis for hashi's my B12 reading was 317pg/mL which is at the lower end of the 'normal' range. I have been taking 1000μg of cyanocobalamin every day which is the most I can buy over the counter although I was originally advised to take 50mcg every day. My GP took no interest in this recommendation and neither prescribed supplements nor checked my levels. A blood test last summer did measure the level and although I don't have a result to hand I was told it was above normal. I have to wait 6 weeks until my next appointment with my endo but I will keep you posted once I have seen her. Many thanks.

  • Doesn't your GP know the meaning of Pernicous ? Will write more later ...

  • My GP practice is unbelievable. It takes up to 4 weeks to get an appointment. It is staffed by locums and I never see the same Dr twice. They only address the immediate symptoms they are presented with and seem to never pay attention to history or evidence from other specialists. I was once told there was nothing wrong with my thyroid as my blood test showed normal TSH and free T4. I pointed out that maybe the thyroxin was responsible for this! They even overlooked the letter from my endo for 3 years! I am penning a SAR today to request all blood test results they hold. The practice policy is not to give this info to patients so I'm having to use the DPA to force it out of them.

  • Nunezhall This article might be of interest

  • What dose would you suggest - they seem to range from 1000mcg to 5000mcg? I am supposed to be on 50mcg of cyanocobalamin - what would be the equivalent? Maybe I should just get the biggest dose I can find?

  • My opinion only as I'm not medically trained, but if level is under 500 I would suggest using 5000mcg Solgar or Jarrows sublingual methylcobalamin lozenges daily for a month (or use up the bottle) then reduce to 1000mcg daily as a maintenance dose. And a B Complex is needed when taking B12 to balance the B vits.

    BUT, and I haven't read all the replies, are you going to ask to be tested for Pernicious Anaemia? If so then hold off any more supplementing until you've had the test.

    You can get more advice from the PA forum here on Health Unlocked:

  • I'm going to stop taking my B12 and D3 supplements and have booked an appointment with my GP in just under 4 weeks time to request blood tests. I've also just submitted a SAR requesting access to all blood test results held on file. They want £10 for this but that seems ok.

  • You say tests on Vit D etc were normal. That often means in range but we often need to be high in the range. May be if you could post your 'normal' results we could comment on those as well.

    The doctors often haven't a clue! Mine told me to stop taking any vitamins etc but I ignored but at a later point was glad I had been taking them-thing they had done a bit of useful reading!

  • My original Vit D was 31.4 nmol/I when I was diagnosed with hashi's. This is apparently really quite low. I don't have a current blood test result other than being told it's now 'normal'. I was originally instructed to take 20,000 units of colecalciferol every day (which I think = 500mcg) but as I said above, my GP ignored this advice. I am therefore taking an over the counter supplement of 25μg every day which probably isn't enough.

  • Nunezhall Recommended level is 100-150nmol/L. You can get a fingerprick blood spot test from City Assays for £28 . It's recommended to test once or twice a year.

    As you're taking D3, are you taking it's important co-factors K2-MK7 and magnesium?

    Vit D aids the absorption of calcium from food and K2 directs the calcium to bones and teeth rather than arteries and soft tissues.

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