Graves - lower leg pain (both legs), hair loss

[zmlb9]

I posted my history before. latest tests showed I was euthyroid - however I have other issues- namely bone/joint pain in both lower legs (no swelling,redness or warmth) - it hurts to walk and my walking/gait is abnormal - also hair loss and tiredness. I also get cramping in my legs. Recently had new comprehensive blood tests that show all normal except for slightly lower than normal calcium, ALP slightly raised and High Mean platelet volume. My heart rate has been lower than is normal for me for a couple of months. Any ideas? I will be contacting my GP and am due to have other blood tests soon. Any other blood tests I should ask for? Many Thanks.

[Regenallotment Ambassador]

Hello,

what are your latest thyroid blood test readings? Some of your symptoms show up as hypo symptoms for me.

[zmlb9 in reply to Regenallotment]

My latest test showed "euthyroid" according to my Endo

TSH 3.35 milliunit

T4 10.4 pmol/l “lower end of normal”

T3 not tested

Many thanks

[pennyannie in reply to zmlb9]

Hey there again :

Please add ranges to any blood test :

A TSH over 3 shows you are now as dealing with symptoms of hypothyroidism :

Guessing T4 is low in range which will likely mean your T3 is low in range -

Has your dose of the AT drug been adjusted down from when you last posted a month ago ?

I hope you have eased up in the gym - as you are now looking to have too few thyroid hormones circulating to allow you to function as you would like.

[zmlb9 in reply to pennyannie]

I am still on 10 mg Carbimazole. After my next test it is hoped this can be reduced further.

[pennyannie in reply to zmlb9]

Well you look to need a dose reduction in the AT now - when is your next blood test ?

You can read all your previous replies by going to your Profile page -

just press the Profile icon on the task bar where the Alert bell also sits -

as I wrote more fully on your results last month.

[zmlb9 in reply to pennyannie]

I had the latest blood tests on March 26 - but they messed up and tested everything except the TSH and T4- and then took up until yesterday to get back to me. (The latest values of TSH and T4 I posted here were for February 25). Before going for the next blood test I wanted to see if there is anything else I should ask them to test for. I will ask them to test for" TPO and TgAb antibodies tested to confirm it’s not Hashimoto’s, and definitely Graves? " as suggested here . The leg pain is becoming something I can't just put up with. Many thanks.

[pennyannie in reply to zmlb9]

Well again - please read my previous reply a month ago -

You need your TSH + Free T3 + Free T4 run + antibodies + inflammation + ferritin, folate, B12 and vitamin D - as these core strength vitamins and minerals need to be maintained at optimal levels -

When metabolism runs too fast or too slow, as seems to have happened to you - the body struggles to extract these key nutrients from your food and low levels - though likely in the range - will compound your health issues further than necessary,

[zmlb9 in reply to pennyannie]

I did ask them to check ferritin, folate, B12 and vitamin D and that was all normal. Only the calcium was below normal. What inflammation indicators should I ask them to test for?

[pennyannie in reply to zmlb9]

I'm afraid ' normal ' is an opinion - and not a fact - and some NHS ranges too wide to even be sensible -

Please advise what your vitamins and minerals results and ranges are ?

Your TSH is said to be normal - as it is in the range - but you are experiencing symptoms of hypothyroidism and why you started this second post with you now tolerating -

' lower leg pain and hair loss ' :

CR-P is just a general inflammation marker :

[zmlb9 in reply to pennyannie]

B12 was 128 pmol - Feritin was 62 ug/L, Folate was 17.2 ug/l, Vit D was 72.8 nmol/L - They did provide ranges for these tests

B 12 range 25-165/ Ferritin range 20-300/ Folates range not provided/Vit D range 50-150

[pennyannie in reply to zmlb9]

Ok thanks - Active B12 is ok - Ferritin a little low - folate ok - and vitamin D a little on the low -

Just for reference I now aim for an Active B12 at around 125 - ( serum B12 500++ ) folate around 20 - ferritin up at around 100 and vitamin D up at around 125.

[zmlb9 in reply to pennyannie]

Thanks I made a note of that. This forum is invaluable for real experience. I found that after the initial diagnosis/ consultation it is hard to get information/ support from the Endo dept and my GP does not know enough about the specifics. On the other hand I managed to establish a direct link to the specialist pharmacist in the Endo dept who can add things to my blood tests as I request (at least so far). So to summarize I will ask them to test for TPO and TgAb antibodies tested to confirm it’s not Hashimoto and also for CR-P general inflammation marker. I did a quick search on Hashimoto and indeed it present with slow heart rate, hair loss and joint stiffness and muscle pain - which would seem to fit my profile at the moment.

[pennyannie in reply to zmlb9]

Your profile at the moment also presents as some one with Graves Disease - and for which you had positive and o/range antibodies as detailed on your Profile page - and as someone who is on an AT drug and at too high a dose of the AT drug:

When the thyroid malfunctions - it is common for several sets of antibodies to be found positive and over range -

Graves Disease treatment takes precedence and is very high T3 and T4 ranges that keep rising rising higher and higher - and which is considered life threatening if not medicated - and the medication is with an Anti Thyroid drug - which dampens down the immune system and semi blocks ones own new daily thyroid hormone production.

Hashimoto's is not treated with an AT drug - the patient experiences transient hyper type phases and longer term the patient 's thyroid becomes disabled with the patient becoming hypothyroid and prescribed T4 - thyroid hormone replacement.

web.archive.org/web/2024122...

[pennyannie in reply to pennyannie]

Ideally - once on the AT drug - the endo team should be trying to maintain your thyroid hormones - T3 and T4 at around mid point in the ranges -

by titrating down your AT drug to bring your T3 and T4 to around 50% through the ranges -

so your thyroid hormones do not fall too far through the ranges with you then tolerating low T3 and T4 readings and symptoms of hypothyroidism.

[pennyannie in reply to pennyannie]

And yes - ranges vary from lab to lab so you can't second guess them -

and you need those ranges specific your blood tests at any one time -

as labs vary and open to change - even within the same laboratory -

[Regenallotment Ambassador in reply to zmlb9]

Your symptoms indicate you are symptomatic of hypothyroidism and not euthyroid.

Could you edit to add the lab ranges? They vary lab to lab, assuming TSH range is 0.27-4.8 (a common one in UK) my TSH needs to be under 1 and FT4 in the top part of range.

Have you had TPO and TgAb antibodies tested to confirm it’s not Hashimoto’s, and definitely Graves?

Are you still on Carbimazole? If so it’s time to think about reducing or block and replace. Tagging PurpleNails who knows way more than me.

[zmlb9 in reply to Regenallotment]

Re lab ranges - I posted the numbers for TSH and T4 they sent me. They gave me no lab ranges. Are these important - should I ask for them to be included? Many thanks.

[humanbean in reply to zmlb9]

They gave me no lab ranges. Are these important - should I ask for them to be included?

Not supplying lab ranges is common and very annoying. Without the lab range test results can't be interpreted. To explain using some made up numbers and tests...

Suppose X is tested and the result is 30, but you don't have the range. Without the range you can't tell if the result is high or low or somewhere in the middle or bottom of range or top of range.

If the range with the test is 25 - 35, then the result of 30 is right bang in the middle of the range.

If the range is 32 - 40 then the result is under range and the patient would probably feel better with a higher level and might need treatment.

If the range is 18 - 24 then the result is over the range and indicates that there might be a problem that needs fixing.

You can see the point, I'm sure. Without a range a test result cannot be interpreted. So always ask for ranges when you get test results.

Different labs use different machines and protocols to do testing, so lab ranges should always be given with a test result that applies to the lab that carried out the test.. You cannot choose which range to use - you must use the one that came with the test.

[zmlb9 in reply to humanbean]

Yes I can see that - it the letters they only specify things like "a bit low" and I keep a table of the results and have looked up the ranges myself - but I can see how different labs may have different ranges. I will ask them to include that.

[humanbean in reply to zmlb9]

It always surprises me that doctors avoid giving full information to people who have been tested, when they can. They probably wouldn't give results at all if they think they could get away with it.

What does "a bit low" actually mean? In thyroid terms it could be referring to the TSH, the Free T4, or the Free T3 - although Free T3 is rarely tested. And depending on what has been tested, "a bit low" could mean different things.

If a patient is hyperthyroid (has an overactive thyroid) and is undiagnosed a low TSH would help with diagnosis. But in hyperthyroidism one would expect the TSH to be very low indeed, not just "a bit low".

If the patient is hyperthyroid and treated with anti-thyroid drugs, then a TSH which is a bit low would suggest the patient might need a higher dose.

If the patient is hypothyroid (has an underactive thyroid) and is untreated a low TSH could suggest that the patient has Secondary (or Central) Hypothyroidism, but more testing would be needed and most doctors would be unlikely to even pick up on the possibility.

If the patient is hypothyroid and treated a low TSH could mean (to a doctor) that the patient is over-treated and they would want to reduce dose. The patient could still feel under-treated but that would probably be dismissed by doctors, but there could be multiple reasons why the patient feels the ways they do e.g. low Free T4, low Free T3, low cortisol.

[zmlb9]

I'll be signing off now - but will get back to you with any news of interest.

Many many thanks 😀

[PurpleNails Administrator]

TSH 3.35 milliunit

T4 10.4 pmol/l “lower end of normal”

T3 not tested

Based on above results, was carbimazole reduced?

[zmlb9 in reply to PurpleNails]

yes they reduced it to10 mg Carbimazole -and I have been on that since Feb 25th

[PurpleNails Administrator in reply to zmlb9]

Good it was reduced, your levels should have risen since then. You must be due a recheck? Ideally TSH, FT4 & FT3 will be tested. but often labs don’t test FT3 if TSH / FT4 in range.

[zmlb9 in reply to PurpleNails]

yes they were supposed to check the levels on March 26th when I went for my last test - but inexplicably they left out the TSH and T4 tests (!) and I have to go back for these. GIven the new issues of leg pain and hair loss I was asking what other tests I should ask for. The general view is that I might be hypothyroid even if my last tests were described as showing I was "biochemically euthyroid" and the dose of Carbimazole is just to high for me at the moment. I am asking the hospital to be tested for Hashimoto antibodies and CR-P general inflammation markers in any case. If you have any other ideas pls let me know. Many thanks !

[PurpleNails Administrator in reply to zmlb9]

How annoying they missed it.

Your key nutrients have been tested recently so nothing terribly low there. Do you take any supplements? I think your leg pains might be a lingering symptom from when your levels were low.

There can be a delay for symtoms to appear & resolve.

Propranolol often prescribed alongside carbimazole. You’ve not mentioned it, but using propranolol & even being hyper can lower magnesium levels which cause leg cramps / pain.

Many on forum take magnesium supplements and K2 as cofactors of vitamin D.

Many benefit from magnesium supplements. I use powdered magnesium citrate before sleep

[zmlb9 in reply to PurpleNails]

Good to know that some symptoms could be a delayed reaction to when my levels were clearly too low. Gives some hope

I only took Propranolol for a few days at the start of November.

As for supplements - I am taking a Calcium 800mg and Magnesium 375 mg Boots supplement, and a Vitamin D supplement at 1000mg -(prescribed to me by GP ages ago)

Anyway - I will ask for the extra blood tests and see how it goes. Will update with any interesting news. Many thanks again.

[sweetmyrtle]

Calcium deficiency can cause leg pain and gait abnormality, there are some good videos on youtubYouTube about it, it is called hypocalcemia. I also suffer leg pain and gait problems and trying to raise calcium level slowly, it is important to take vitamin K2 when taking calcium to get it where it needs to go. Please do your own research and then talk to your GP. It looks like your tsh is still a little too high you would likely feel better lower nearer to 1.