Have Hashi's with sudden worsening of hypo symptoms. Would like feedback on what could be going on.

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First of all, I apologize for the incredibly long post, but I'm trying to give as much detail as possible. TIA for any thoughts!!!

I was diagnosed with Hashimoto's postpartum about a year ago. I was complaining of excessive fatigue/inability to return to running, and pretty bad carpal tunnel. At the time my TSH was 6.893 and Free T3 282.1 pg/dL [230-420] and of course high antibodies. My primary care put me on NatureThroid 32.5mg (25mcg T4/T3). I felt better within the week and my carpal tunnel completely resolved in about 2 weeks. I felt great on this for a year. I had my TSH tested once during this time and it came to 2.785. I trained for a 50 mile race, including hard training with back to back long runs on the weekend. I then started training for a marathon in January with a goal time of 3:15-3:20. I was training hard but felt great. I did a half marathon March 20th at a 7:04min/mile pace. I felt on top of the world and was on track to run what I had termed my "comeback marathon". The next week I still felt good, but then the following week I came down with a minor respiratory tract infection. I was completely better in 3 days and just thought it was a small blip. I went out for a long run that weekend and felt good for the first 6 miles, and then got progressively worse and felt like I had no energy, completely flat, defeated. It was not normal but I just chalked it up to a bad run. The following week, I had a strange inexplicable flair of wrist pain/carpal tunnel for about 3 days, but then that resolved, so again I kind of dismissed it. I was able to do my weekly workouts and hit my paces although they did feel a little bit harder than normal. But every time I tried to do a long run, I crashed after just a few miles and finished feeling like complete crap. I started to get worried about my race but again just figured I needed a good taper and I would feel better. Well, my race came it was one of the worst experiences of my life. I ran the first half at my goal pace but after 8-10 miles I started feeling sort of ill, dizzy, and had no energy. Again, I have run several marathons and have had bad marathons, and this was above and beyond anything I'd ever felt. I am not prone to cramping, and by the end I could barely walk and my muscles were just spasming uncontrollably. 

Ok, fastforward to the following week. The next day I called my doctor and moved my 6 month follow-up to the next week, and got blood work done (unfortunately he only tested my TSH). That week, I developed progressively worse carpal tunnel. I decided to double up on my thyroid dose, and after a few days of that, I then tripled it (so now I was taking 97.5mg (75mcg T4/T3). I felt fine energy-wise (although was not running), but still had carpal tunnel. Then I went in to see my doctor. My TSH came to 2.94. He saw that and said my symptoms were probably not thyroid-related but that we could increase my dose by 16.25mg to see if that would help (I knew it wouldn't because I was already taking more than that but I didn't want to say that, and I started second-guessing myself that I was hypo). So I dropped my dose down to 65mg, then back to 32.5mg. Well a few days later my carpal tunnel got so bad I was waking up in excruciating pain even wearing my braces. I was having shoulder impingement pain as well. I couldn't use my right arm in the morning for 30 mins after waking. I called my doctor asking for further testing and for him to test my free Ts. I did that bloodwork and it came out to TSH 2.58, free T4 0.71 ng/dL [0.6-1.6], free T3 3.59 pg/mL [2.39-6.79]. Seeing that my T4 was on the low end and T3 not super high, I figured that confirmed I was having hypo symptoms, even though they were technically within normal. So I started taking the 97.5mg dose of thyroid again. That weekend I upped my dose, I still felt terrible. I had a horrible run, couldn't move after, my whole body ached, and by Saturday evening I couldn't lift my right arm due to the shoulder impingement. I felt the same Sunday. But Monday (day of three of higher dose), I was SO much better. 

Well my doctor looked at my results on Wednesday and said, "Your T3 is excellent." When I protested, he said rather condescendingly, "I've been doing this 30 years." Mind you, he's not an endo, he's a naturopath MD. I argued with him until he agreed to up my dose to 81.25mg. I knew this would not eliminate my musculoskeletal issues, but figured it was at least a move in the right direction. (note: he also tested for RA antibodies and sed rate and that was normal, and I don't have any joint tenderness)

I've still been taking 97.5mg dose this week, but won't be able to continue this once I run out of the extra Rxs from dosage changes. Still have carpal tunnel and morning stiffness, but my arm got better throughout the week, and then Thursday, I had a great run. However, today (Friday), I suddenly developed this shoulder impingement really bad again where I can't lift my arm. I'm thinking somehow running is triggering it, but I've never had a shoulder problem before. 

Ok, so now for my question. I cannot think of any possible thing this could be other than hypothyroidism. I've scoured the internet and scientific papers for anything at all. But I'm just confused by how suddenly my symptoms worsened, and how my levels are not super low, but even tripling my dose hasn't completely alleviated my symptoms when I was great on a low dose for a year. I'm seeing a new primary care soon and am going to make an appt with an endo instead of continuing to see my current doctor who I'm really p*ssed with. But this will all take time (the endo I'm planning on takes months to get into), and I'm just curious if anyone has any insight into this or has experienced something similar. I'm nervous that I'm going to have to drop down to 81.25mg again and that I'm just going to be miserable, and that when we test my levels again they will be higher, but that I will still be having symptoms, and so my doctor will not listen to me. I know people say that it takes time to have symptom relief with dosage changes, but in my experience it seems like it happens very quickly. Like when I first started on the NatureThroid, I was almost completely better in a week. Is it normal to feel changes so quickly? And does anyone have experience with exercise worsening symptoms - like maybe free Ts are lowish and then exercise is an added stress that sort of depletes the body if it's not able to compensate with normal thyroid function? I'm not completely sure of the biochemistry (I don't know that anyone is actually), so I'm just kind of postulating. 

If you read this whole thing and have any comments, thank you SOO much!

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5 Replies

  • Posted

    Normally I would be envious of those of you in the US, having better access for Thyroid ttreatment than we have in the UK, usually it's Naturopaths who are the people TO see who will sort things, yours seems more wound up than an Endo!

    Your Free T4 and T3 certainly were not very optimal, nor was even TSH -  nothing wrong with a low but not suppressed TSH (ie. over 0.04) if T3 and T4 are still in range, although there is incredible reluctance to do this still even though it has been shown not to be harmful in studies.

    I would be looking to aim to get the T4 and T3 somewhere in say about the upper third of the range, not right down as yours were. Just having "in range" is the problem, lots of us don't feel at all right when when it is "just in"

    Mind you, even with good figures, my Carpal Tunnel and Shoulder impingement syndrome havn't been any better... Hypothyroidism may be associated with causing them, but getting thyroid sorted is no guarantee of "cure" once it's underway.

    In a mens forum I am a member of, US members are usually the ones who find it relatively easy to find a Doctor who will dose more related to symptoms rather than just figures alone. Here in the UK it's MUCH harder if not impossible. Dosing with Natural Dessicated thyroid is more of an option in the US usually too, which suits some people.

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    • Posted

      I'm sorry to hear of your troubles in the UK! I totally agree with getting my levels up into the higher end of the range. I'm just getting worried that it's not going to resolve my carpal tunnel/shoulder impingement, like is happening with you. I'm concerned that other autoimmune issues could maybe be going on. I don't know, autoimmune stuff is very difficult to understand! So now I'm not sure if I should consider these symptoms as continued hypo symptoms if my energy levels are good. Like I said, I had complete resolution of the carpal tunnel when I started treatment before, but perhaps something else is going on now (I just have no idea what!)
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  • Posted

    Jennifer, I've got hypothyroidism and have had shoulder impingement for which I have had a shoulder operation in June 2014, when the surgeon smoothed away the bone spurs and cleaned out the debris from the joint.

    The cause of the shoulder impingement has been identified as poor posture from working at a desk and/or using a computer. I was 'lucky' in that I'm petite so the gap in my shoulder joint, where the muscles and tendons run, is smaller than in other people. This meant I got an early warning there was a problem, other people aren't so lucky, they find out too late, that their joint has moved, and has set in the new, wrong, round-shouldered position.

    Google functional neck forward, or functional posture.

    I read in an occupational health leaflet at work that people with hypothyroidism are more susceptible to muscular skeletal conditions. It didn't say why, but from experience, I would say it's due to the fatigue and muscle weakness we experience.

    To everyone's surprise I have regained full mobility of the shoulder and am pain free and I am now playing badminton again.

    To get to this stage, I did physiotherapy exercises three times a day. As I improved I also went to Pilates classes. To maintain this degree of mobility I really have to work at it. I still do the physio exercises daily. One of the symptoms was that the muscles and tendons got trapped when I lifted my arm giving a pain like I'd been stabbed with a knife. I could still lift my arm if I helped it up slowly with my other arm. So from my experience I would advise seeing a physiotherapist to get your posture sorted.

    I wonder whether your thyroid symptoms are due to training so soon after you were poorly. May be this put your body under stress and caused problems with your adrenal glands?? Only guessing.

    How are your vitamins and minerals? Ferritin needs to be 70+ to process thyroid hormones properly. Others to check are: vitamin B12, vitamin D, iron, folate. These are the main ones that can lead to fatigue.

    The only other yhing I can think of to add is that it is possible to get NDT without a prescription iff the internet (I'm on one named ThyroGold), so this should remove the concern you have about running out if medication. Crumbs - my reply is nearly as long as your original post! I do hope there is something in it that is of use.

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    • Posted

      Thank you so much for your thorough reply! I'm glad to hear your shoulder is doing well! I may end up going to my orthopedist soon to see how to manage this impingement. It's strange because it started suddenly, is bilateral, and comes and goes in severity for no apparent reason. I had assumed that the reason for the impingement with hypothyroid was the accumulation of mucopolysaccharides in the tissues, leading to compressive issues like carpal tunnel. But it seems like my carpal tunnel is actually getting better but the impingement is getting worse. So now I'm not sure what to think.

      As for other levels, my b12 and b6 came up pretty low normal, so I'm supplementing now. I'm not sure of the others but I already take iron supplements because I was a little low in my third trimester and just continued with them because I don't eat meat (seafood, but not daily).

      Thanks for the tip on ThyroGold... That actually makes me feel better that there's an option to get some if I need it!

      Well I guess I'll just have to wait and see a little bit and try to have some patience. I'm not very good at that! Thanks again!

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    • Posted

      Sounds right, surgery as the only option for the impingement (a subacromial decompression). My Doctor keeps trying to put me off as it is notoriously painful and a fairy slow recovery (plus I walk with crutches so it would complicate matters). With that I wonder if onging bone remodelling is the problem, unlike with carpal tunnel syndrome which more classically is linked with hyporthyroidism and the effects of myxoedema. I am too late for the left side, the supraspinatus tendon has already snapped, but for the other side it might be the only answer.

      Sadly at over 40 (I am 58) the success rate for tendon repairs is tiny and not usually an option, so I am stuck with that side probelms.

      Like Jeniffer31654 I too have opted for the Natural Desscated thyroid and use Thyroid-s.

      The vits and minerals are defintely important for T4 to T3 conversion - I would add in Magnesium to that list and emphasise FOLATE not just Folic acid when supplementing, as not everyone gets the benefit from Folic acid. A search for "vitamins and minerals thyroid uk" will bring up a usefully intersting first page on the subject.

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