1 year on, cause not known: Random pain, weakness, knee pain. Had subacute thyroiditis

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 :)

7 Replies

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  • Activelazy,

    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.

    chriskresser.com/the-gluten...

    thyroiduk.org.uk/tuk/about_...

    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.

  • Thank you Clutter,

    Yes both antibodies were negative. All other are in good range too.

    As t3 and t4 are good that's why I m not sure if I should ask for levo. And can it make me overactive again?

    Thank you

    Activelazy

  • Activelazy,

    Levothyroxine is likely to over medicate you as FT4 is high in range.

  • 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.

  • Thank you Leopard,

    Yes I think I won't ask for levo then. I do worry about going hyper again.

    Will come back with other values.

    Thx again

    Activelazy

  • Also, the reason why I asked this was could it be a case of me normal at tsh of 1. As it was 1 before illnesses.

    Currently, 2.9

  • 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. :)

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