I am male, 45, slim and underweight (genetically) but otherwise WAS fit, fast and active. Not on any medication. Normal blood pressure, no other condition, nothing. I don't smoke.
I had sub acute thyroiditis in November 2105. Had pain in my neck which I knew was not a usual sore throat. Diagnosed in January 2016. A couple of months before the inflammation to my thyroid gland i.e. in Sep I felt some uneasiness in my knees (more in right knee). I noticed I was having some trouble getting up from floor level. Did not do anything about it as I thought it would go away. In October 2015 things got worse. Pain in my knees increased but before that, for a couple of days I had severe pain in my right shin bone. That pain resolved but severe pain came in my knees. I was obviously given painkillers. I had them some days but that was not a treatment. My friend advised me to get my vid d checked. It came out low. I was happy that it can be treated with simple supplementation. From fast, I became very slow (very upsetting). I had hardly come to terms with it when in second week of November 15, I had this pain on one particular point in my neck. I went to doctors again. They gave me antibiotics. It did not help. Pain got worse. I put the knees to one side for now. Went to doctors again and insisted on a scan of neck. she said your body will fight it. I don't know why we pay doctors as much as we do. They deserve about a quarter of what they get!! Grrrr!! One GP said there was some wax in my ear and that could be the cause of my neck pain.
Anyhow, a week later, I woke up from my sleep with severe sweating and shivering. I had viral in my life before as a child and had shivering but nothing like this. This continued for few days. Also had some temperature most of the time. Now I had not slept for many nights.
I went to doctor again and requested her to send me for a scan urgently. Would not agree easily. Had to fight. She then referred to head and neck clinic and said I will be seen within 2 weeks. And I was seen. The specialist checked with a camera down my nose and said there was nothing serious. Did me chest x ray on the same day and said you will receive a letter about your ultrasound of neck. Duh! This was on 10th December 15. I received a letter on 17th Dec to say my ultra sound is on 21st of January 2016. There was no change in my condition. My knees were still the same, night sweats, fever, shivering, everything same. I did not sleep at all for at least 2 months. My GP gave me another course of antibiotics. I just took it but in vain. I was still waiting for my appointment. I kept taking vit d. By the way, when vit d came out low, my full blood count and other routine blood tests came out normal.
TSH was 1.08. (This was before the neck issue). Also had knee xray at this time which showed normal.
When I could not cope with night sweats and shivering in December 15, one night I rushed to A&E (a mistake!). They still did my blood tests and they were still fine. Not sure if they did tsh, etc. But my CRP was 30. ESR 20. CRP was 30 also few days ago when tested at surgery. They said go back to your GP and they will send my results and there is nothing to worry.
After the ultra sound and more detailed blood tests (TSH, ft3, ft4 and two antibodies) and a radio active iodine uptake scan it was actually confirmed that I had subacute thyroiditis and was going through a phase of hyperthyroidism. NSAIDS was the only thing for now. I continued with ibuprufen and pcm which was tsking for relief anyway. My endo explained that it is very likely that thyroid will eventually return to normal but can take SOME time. ha ha. This is because first it will become under active, which it did. The max TSH i have seen is 6.5. To many, it may seem nothing.
When I felt things were improving in February as I felt a little better, I thought I will now concentrate on my knees as I had lost the ability to squat or get up from floor level without the help of my arms. I felt awful on loosing this mobility as could not do so many things without asking for help. I cried a lot. I am a cleaning freak too so not being able to keep my house clean was always a stressful thing, but I could not help.
I was sent to Physio to learn exercises to strengthen my leg muscles. I did them religiously but still could not regain my ability to squat. I tried but it hurt a lot. I can fold my legs but the final bit when angle behind the knees is less than 10 degrees is where I have to stop. In March, I woke up from sleep with severe pain in my hips early morning like 4 am. It was bad. Then it extended to my hands, arms, feet and even made knees worse again. By the time, it was proper morning, I was completely in tears. I rang my doctor and he advised to do some more blood tests. This time he came up with B12. I was slightly low. I was given six injections of B12. I hoped it will solve this issue. In the meantime my follow up appt with endo showed that my tsh had dropped from 6.5 in March to 4.5 in April.
Near the end of March I was also having an unsteady head, like if I was missing a moment on turning. It was not that World was going round, it wasn't. But it was scary. I thought B12 injections were causing it (Hydroxocobalamin). I thought it will wear off. I was told to have one every 3 months even though my intrinsic factor antibodies was negative. My CK was normal too. The pains were a bit less but not settling even by June. I thought I will go back to my knees now. Other pains will go eventually.
I went to doctor again and he sent me to musckuloskeletal department where an unhelpful lady told me that there was nothing wrong with my knees and it MIGHT get better with time.
I got my next injection in June in hope that it will bring further improvement to my generalised pain. I was once again ready to do something about my knees but .... a sudden weakness gripped my arms. They felt like empty on the inside, not paralysed but empty and would get tired even on making a few seconds video on my phone or beat an egg or even to put clothes on. I was horrified once again. I forgot about the knees again. Went back to gp who said it is after effect of thyroiditis but agreed to refer me to a neurologist for this and for occasional random pains, particularly burning sensations in my hands. As the random pains reduced a bit I thought B12 was slowly working. But arm weakness still would not let me go back to my ...KNEES!
In July, I felt that arm weakness was not continuous. So, that made me feel somewhat happy. In July and half of August, I was so much better. No random pains, burning sensation in hands or dizziness. Just very slight pain in my wrists. Not good but could be tolerated. I attributed it to the extra pressure on them due to last many weeks of weak upper arms. By mid August pain in my hands returned. I was not expecting it back. I had another B12 injection thinking it might be due. Did not help.
I have also developed some boils on my upper back and shoulders. One or two also keep coming and going on my face too. Never had pimples even when I was sweet 16. lol. For the last few weeks I get some palpitations. I had some when I had over active thyroid but dont know why now. I was seen by neurologist on 30 Sep who checked me and did not think of anything serious. An EMG and brain MRI was ordered. EMG came normal on 2nd November. MRI is due on 21 Dec. Neuro gave me beta blockers to control my nerves and head unsteadiness. I took them few days but i think it made things worse. So, I stopped it and told GP. She said if you are better without it, that's fine.
SUMMARY:
Thyroid anti bodies negative on 4 different occasions.
TSH: Nov 15 - 1.08 (before thyroiditis) no T3 T4 reading for this time.
Dec - Jan 0.019
March - 6.5
April - 4.5
July 4.2 FT3 5.3, FT4 17.4 (see ranges below)
August - 3.6
Oct - 2.5(0.3-4.5), free t3 5.1(3.1 - 6.8), Free T4 20.2 (11 - 22)
Nov 2016 - 2.9
current symptoms:
weak legs and fragile knees
On and off burning sensation in hands
boils
random pains everywhere except chest. comes and goes. Pain is not continuous. Is pulsating type. Comes for few seconds and goes. And comes back in few minutes or at least few times a day. Does not kill me but is very uncomfortable.
Palpitations, on and off, currently not very severe but not settling and uncomfortable.
Knees- as before, and even worse. I am struggling to walk. I was walking really well only few weeks ago. Squatting was the problem. Sometimes pain in knees comes even when resting and can be quite bad. I dont know if it is like other pains or related to my knee.
Upper back pain.
Question:
I am planning to ask for a low dose of thyroxine, don't think they will listen anyway, given my levels. But should I really consider this as an option. Is it a bad idea?
I am really confused. Last B12 was 917 and vit d was 80. Iron about 70. Calc near the higher range. So was protein.
I have read sub acute thyroiditis mostly resolves itself but there is some chance that gland may not make full recovery. I dont even know if this is causing any problem. Brain scan is unlikely to reveal anything.
Any suggestions or ideas welcome.
And hope my info can help someone too
Written by
activelazy
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Was it just thyroid peroxidase antibodies (TPOab) which were negative? Some people are negative for TPOab but positive for thyroglobulin antibodies (TgAb) which would indicate autoimmune thyroid disease (Hashimoto's). TgAb is rarely tested in primary care but you can order private thyroid tests to check it. Your TSH levels have fluctuated enormously between 0.01 and 6.5 which is indicative of Hashimoto's.
I was very unwell with euthyroid Hashimoto's ie high TPOab but unequivocally normal TSH, FT4 and FT3. Had I realised that 100% gluten-free diet could reduce flares and improve symptoms I would certainly have tried it.
NHS won't usually diagnose hypothyroidism until TSH is >4.5 or FT4 is <11.0. Your FT4 in October and November indicates your thyroid is struggling to produce hormone but FT4 and FT3 were excellent in October. I don't think you will get a trial of Levothyroxine and I'm not sure it would make an appreciable difference to your symptoms as FT4 and FT3 are high in range.
Have you had ferritin, vitamin D, B12 and folate tested? Low/deficient levels can cause musculoskeletal pain, palpitations, breathlessness, fatigue and low mood similar to hypothyroid symptoms.
I am not a medical professional and this information is not intended to be a substitute for medical advice from your own doctor. Please check with your personal physician before applying any of these suggestions.
Hypothyroidism does not seem likely with those results and Levo could do you more harm than good. Please edit D3, B12, Iron and Calcium to show units and normal ranges please.
Sorry did not write back. I was deficient in D3 (<13) as report print I have, in November 2015, had a loading dose. And I have continued with supplementation since. Last time it was around 80 in July 2016. Things were improving. Regarding my B12, please see my reply to greygoose today. Also see that reply for Iron. However, it was 63 ug/L in November. Calcium was always ok in the blood but not sure about the bones. In July 2016 it was:
serum cal 2.47 (2.2 - 2.6 mmol/L)
Serum Albumin 48 (35 - 50 g/L)
Corrected Serum Calc 2.31 (2.2 - 2.6 mmol/L)
Kidney function, Liver function were fine. Bone profile was fine.
What concerns me most is your B12. What was your level when you were diagnosed?
You say your IF test was negative? Unfortunately, a negative IF test does not rule out Pernicious Anemia completely.
The B12 level you quote above, was just done just before your three-monthly injection? Or just after? Was it a serum test or an active test? It it was a serum test, it doesn't count for very much, it's bound to be high when you're having injections.
However, it could very well be that three monthly injections aren't enough for you. That's often the case, I believe, and people find they need to supplement in between injections with sublingual methylcobalam. Were you also taking a B complex, to balance the Bs?
I think that you would probably be better off on the Pernicious Anemia forum, on here. They know far more about B12 than we do. But, even so, it does sound like the main problem, to me.
Sorry did not get back sooner. Been quite unwell. My B12 was 137 (serum) in March when I had pains in my hands and feet and legs and arms. Then I was given 6 injections over 2 weeks. B12 of 917 was at the end of first week of May. In June, my pain was considerably less. Only had some problem walking as it hurt under my feet. I was walking slow because of that but not because of lack energy. Energy was not too bad. End of June I felt weakness in my arms and saw my GP. He said it might be an after effect of thyroiditis and will probably go away some day. I took another injection anyway as it was nearing 3 months. My sixth injection of loading dose was on 28th March. My next I took on 21st June when arm weakness scared me. The arm weakness lasted many days. In July I was a bit better, less weakness and less pains. August was very good. So good I drove all the way to Fort William from Newcastle and never got tired or had much pain, even climbed a small part of a mountain in Glen Coe. Amazing me! Very little pain and reasonably good energy. Mid September some pain came back in my hands and knees. As it was nearly 3 months again I took another injection on 15th September. this time pain lasted a few days. October I had some improvement. On 1/11/2016 I went to hospital for an EMG test of my muscles and nerves. They were fine. Couple of blood tests also confirmed that I dont have any muscle disease. The day I went to hosp for EMG, I went in bus. So had to walk. I was amazed at my walking speed. It was impressive considering what I had been through. Knees were not hurting (at least in walking). I even thought why some people in front of me were walking so slow and I overtook them. (remembered my good old days when no one could walk with me!). I was the one at my work place who initiated a group walk at lunch time and many joined.
All this time I kept thinking of Hypothyroidism more than B12. But as you can see the trend of my TFT shows great improvement, I am very confused now. I asked my GP in Sep, do i really need B12 injections when I do not have PA. I asked this because I think it makes me a bit dizzy. However, I am not sure if it was this or the lack of this that made me dizzy because I had this feeling around my 4th injection (Loading dose in March)of loading dose. Not that the World was spinning but just that when I turned my head from one position to another, I kind of missed a moment somewhere causing me a slight nausea as well. I did not fall or anything. I also got some itchy skin after my third injection, I took cetrizine and that cared for it. In reply to my question, GP said (about B12) that it was not doing me any harm but not doing me any good either as I dont have PA. I thought I will not take it anymore. 3 Months will complete on 15th Dec.
My condition is deteriorating clearly, more pains (hands and feet mainly but legs and arms too) and burning feeling of hands everyday, more weakness and more persistent fluttering in my chest (not big bangs). Struggling to walk because knees are extraordinary weak. Just on 1st Nov they were soooo good as i said.
I do remember pointing out to my GP in march that guidelines seem to suggest that I should get injections every other day as long as improvement is felt and then more frequently than 1 in 3 months. But they did not think my symptoms were neurological.
Now, there is another twist to my story. My ferritin is not great (has never been). It is around 60 always. Only once it was 114 and that was in April. I did take some ferrous sulphate around that time I think. But usually it is around 60 -65. My blood film always shows low MCV, Low MCHC and my HB concentration is always round 11 -12. These have never been a matter of concern because I have a problem with beta globin chains. Basically, I am carrier of thallasemia. this is generally not considered to be an issue. My whole family carries this trait. In March, I also insisted that I be seen by a haemetologist but NO. My case is tricky as my bone marrow is not perfect giving rise to my trait by birth. I have been crying for 9 months but they agreed to refer me to haemetology only last week when I told them that my sister died of Lukemia at the age of 44 and I am now 45. But they still dont think an urgent referral is possible. I am now going to see one privately. This is my Xmas present instead of a new lens for my camera which is now rusting/ resting for more than a year. ha ha.
I also decided to get some tests done privately before seeing him. Results currently awaited for Active B12, MMA, homocystiene and Red cell folate. Just used my instinct based on knowledge gained here. I could be iron deficient, b12 deficient or both or none of these. If none of these, I will feel doomed. I hope my bone marrow is not playing up! That is scary. Current symptoms are scary enough. The strength I get from here is amazing.
But I must say, I am very scared now. Starting to lose hope as I become more and more immobile, in greater pain and what not. Not enjoying life at all. I was, one month ago.
Friends with B12 deficiency all indicate the symptoms resume after two months. Try taking sublingual Methyl-B12 when symptoms resume. With low B12 and Iron, I wonder are you either vegetarian or taking tablets for stomach acid?
I am not vegetarian but not a big meat eater either. Not alcoholic either. Dont smoke. I did take tablet for stomach acid for a short time but that was few years ago. Do you think B12 is my issue?
Well, that's a lot of information, but you didn't answer any of my questions. lol I do think your B12 is of great concern, whether you have PA or not. And it's not certain that you don't, and you would be better off on the PA forum, because they know much more about it than us. But your symptoms scream B12 deficiency.
Sorry if I gave too much detail. I am just not used to write less. lol. I think one question that I did not answer is about B Complex. In May I took it for few days but very few. I think may be 10 days or so. Then I stopped it because I thought I was feeling that slight dizziness like in March when I had injections. I must say though that it may or may not be related to taking it. Just don't know. I wish I could continue to take it.
If B is what will work I will have to take it. I am hoping to see a hematologist next week. Was there any other question that I did not answer? Please tell me.
When were the above labs done - before your injection or after your injection?
What was your level at the time of diagnosis?
Was it a serum test, or an active test?
But, whatever the answer to these questions, you have a lot of B12 deficiency symptoms - it's not just people with PA that are deficient in B12, you know. Most hypos are because they cannot absorb it. And, I don't think the three monthly injections are enough for you, and I do think you should go back on the B complex. The Bs all work together, and need to be kept balanced.
Well, the thing is, there's no point in doing a serum B12 test when on any kind of supplementation. The test is going to be skewed, so you don't really know what your level is. It could still be very low.
Yes, it was much too low. Which is why you needed the injections - and possibly more than that. And why you needed to be tested for PA. But, just because the PA test was negative, it doesn't mean you don't have PA, the test is somewhat unreliable.
And, if you stop the injections, the level could go back down again.
Hi activelazy your story is quite something. I also had some similar things. I found after being diagnosed as hypo I became aware of issues I never had before. I hadn't really visited the doctors for years, this last year it seems I need my own parking spot, but getting there gradually. I have Hashimotos and just for good measure I even had Pneumonia this year, was walking around with it for 7 weeks.
A lot of my vitamins were not good, Vit D, deficient, folate low, B12 insufficient. I was recently tested for PA IF, mine came back as 5, I did post on the PAS forum, but it seems it's hard to distinguish what the number means. I also had a bone profile as my Vit d was terrible. Did you also have a bone profile blood test done, as there are a few things on that test, one of these being Serum inorganic phosphate mine was just about in range by 0.01, this naturally points to low Vit d, but worth checking the other values as a just in case i.e. calcium.
thank you for your reply. I can see you have gone through a lot too. I like your description of requiring your own parking bay a the doctors. It took me some time to get round to things. I have been and still am quite unwell and demoralized. Getting worse by the day. I was deficient in Vit D which has been long corrected. B12 is still a point of deliberation (See my reply to greygoose please). IF came negative. I dont have the figures but I have it in writing from Endo that it was negative so was the other Anti GP Cell. Calcium was fine, at least in blood, not sure how much would have been in the bone after a Vit D deficiency. I think when blood needs calcium, it can take it out of the bones to punish us for not looking after ourselves.
I have received my private blood tests today. My last B12 Injection was on 15th September 2016. These blood samples were collected on 6th December: (At Nuffield Health)
Active B12: >256 pmol/L (25.1 - 165)
Red Cell Folate: 1607 nmol/L (285.4 - 1474.7)
Homocysteine: 9.80 umol/L (less than 15.0)
Methylmalonic acid: 0.10 ug/L (<0.29)
What is your opinion?
I am drawn once again towards thyroid as i feel rubbish. On thyroid, although my free t3 and free t4 look good in October my tsh was 2.5.
(The only thing that is sticking into my head is that when i was well my test was 1.08. I dont know what my FT3 and FT4 were at that time because if your TSH is normal they dont check FT3 and FT4.
I have a lot of weakness, getting tired very quickly, somewhat breathless, papitations, some sort of dizziness at times (no vertigo), on and off slight nausea and a very bad pain on front of right knee (not continuous but almost always).
With these results I am lost. I will be seeing my haematologist soon with more up to date FBC, serum folate and iron studies. For these three my results are awaited.
You'll get better advice re Active B12, folate, homocysteine and MMA from healthunlocked.com/
TSH > 2.0 does indicate your thyroid is struggling to produce hormone but NHS won't diagnose hypothyroidism until TSH is over range or FT4 below range. You could try supplementing 200mcg selenium which is thyroid friendly and perhaps try a thyroid supplement like NutriThyroid.
Joint pain is often due to vitamin D deficiency and/or low ferritin. Ask your GP to test.
Overactive thyroid doesn't cause B12 deficiency. Pernicious anaemia, vegetarianism and malabsorption of nutrients are the usual reasons for B12 deficiency.
Latest results dont seem to suggest I have B12 malabsorption. I am not a vegetarian either. Wheat is my staple diet and PA tests are negative (I know they are not always correct, but still). With a retained active b12 after supplementation seems to suggest 'no malabsorption'.
Looking at my TSH, FT3 and FT4, in the beginning of my original post on the top, you suggested that Levothyroxine is likely to 'over medicate' me. My TSH trend shows going down since March 2016 except in November.
March - 6.5
April - 4.5
July 4.2 FT3 5.3, FT4 17.4 (see ranges below)
August - 3.6
Oct - 2.5(0.3-4.5), free t3 5.1(3.1 - 6.8), Free T4 20.2 (11 - 22)
Nov 2016 - 2.9 (SLIGHT INCREASE COMPARED TO OCTOBER 2016)
ANTIBODIES TESTED IN JANUARY 2016: when thyroid was over active producing a TSH of 0.019:
peroxidase antibodies - 14.5 (<=34)
thryoglobulin antibodies - 23.3 (<=115)
My TSH before I fell ill was 1.08 (checked when my FBC, vit d, kidney, liver, etc were being tested in November 2015 when I had some knee pain).
Please think about it. Could a TSH of 1 be my normal. And could it be a case of me struggling to achieve this target in the last leg of my resolving thyroiditis? my current FT3 and FT4 are not bad though. But I dont know what they were when my TSH was 1.08. What matters more - TSH or actual hormone?
B12 137 means you were B12 deficient whatever the cause. Although your serum and active B12 have improved since injections I think it can take a long time for symptoms to resolve. You'll really get better advice if you post on healthunlocked.com/pasoc
There's a lot of fluctuation in your thyroid results which is surprising as you've said you are negative for autoimmune thyroiditis (Hashimoto's). It is possible that you are sero negative and an ultrasound scan might detect damage consistent with Hashimoto's. It won't make any difference to a hypothyroid diagnosis though. NHS will still usually wait until TSH is over range or FT4 below range before making a diagnosis.
Although your TSH was slightly high in October, FT4 and FT3 were both very good, and unlikely to make you feel symptomatic. FT4 was close to top of range and even a little Levothyroxine would be likely to push it over range.
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