What kind of pain do you get with hypo?

[CarolineC57]

This is going to sound like a daft question - but since my last blood test, and now my adrenal test results, I'm beginning to wonder if I really do have thyroid problems or if my pain is simply due to arthritis (or even fibromyalgia, which is the diagnosis they've given me). I'm undiagnosed by the NHS with normal TSH. But Dr P does think I'm hypo.

The question is, what kind of pain do you actually get with hypothyroidism? My pain is all in my major joints - shoulders, knees, ankles - as well as in my spine and neck. And my hips are just starting to hurt too. Also, the bones in my feet are very painful too. The pain definitely feels like arthritis-type pain, with pain and stiffness when trying to move the joint - along with restricted movement in all these major joints. X-rays have confirmed a little osteo-arthritis in one knee and one ankle - the only other place they've X-rayed is my shoulder, and they say nothing shows up there.

So, could this kind of arthritis-type pain and restricted movement be anything to do with thyroid problems, or is it all just osteo-arthritis. What does your hypo pain feel like? Thanks!

[shaws]

I only had pain after I began levothyroxine and it was just as you stated above.

Please get a copy of your blood test results for your thyroid gland, with the ranges, from the surgery and post on a new question for members to comment.

Nowadays, more notice is taken of the whereabouts were the TSH lands than of clinical symptoms. We are entitled to copies of our blood tests and the surgery may ask for a nominal sum to cover paper/ink.

This is a link re fibromyalgia:

web.archive.org/web/2010103...

Bear in mind that fibromyalgia, ME, and Chronic Fatigue were only named around 10 years after the introduction of the thyroid gland blood tests, possibly because the TSH didn't fall within a certain number. That's not to say they are not diseases in their own right (although I read yesterday they will now be classed as 'neurological' conditions. My belief is that most probably thyroid hormones alleviated the symptoms which were being experienced.

If your GP hasn't tested your B12, Vitamin D, iron, ferritin and folate ask for these to be done as deficiencies can cause symptoms as well.

[CarolineC57 in reply to shaws]

Thanks, Shaws. I posted my recent blood results the other day - but didn't get many responses. I'll post them again later and see if I get any further responses. The responses I got the other day seemed to suggest the same as my GP - the TSH is normal therefore I don't have a thyroid problem. I'm now very confused!

[shaws in reply to CarolineC57]

I'm not good with blood tests myself but will look at your previous post and copy and paste your results on this one.

[shaws in reply to shaws]

These are your latest blood test results. I will say as you have been diagnosed with fibromyalgia and CFS around 1999 it would seem to me (not medically qualified) and I would definitely go by Dr P as he is extremely knowledgeable as he has hypo himself and if you read 'Tears Behind Closed Doors' by diana Holmes (you can borrow from Thyroiduk.org) you will see that she was diagnosed with 12 diseases, treated for all of them, even an op on her spine. Was finally in a wheelchair till she saw Dr P. He told her even before he examined her and she returned to good health.

TSH 0.238mU/L (0.270 - 4.200)

Free T4 13.68 pmol/L (12 - 22)

[not had Free T3 done this time]

Serum B12 779 ng/L (191 - 663)

[awaiting Active B12 result]

Ferritin 56.0 ug/L (5 - 148)

Folate 19.5 ug/L (4.6 - 18.7)

Vitamin D 99.8 nmol/L

[75-200 nmol/L: Optimally replete]

[CarolineC57 in reply to shaws]

Thanks, Shaws. Yes you're right - I need to go back to Dr P and see what he says. I'm just very confused now as my blood test results seem to suggest no hypo, and my adrenal test results (posted yesterday in another thread) seem to suggest I have *too much* cortisol rather than too little. So I'm not sure if I should even be on NDT or NutriAdrenal - both of which I'm taking on Dr P's advice and without my GP's knowledge. The thing is, I seem to be feeling even more ill now.

Anyway, this weekend I'll make it a priority to write to Dr P again with all my results and see what he says. Thanks!

[greygoose in reply to CarolineC57]

Your TSH is low, true, but that is meaningless. Your FT4 says hypo. It's very low - too low - and your FT3 probably is too. These are the important tests - TSH on it's own doesn't mean much. Unfortunately, doctors have been taught otherwise!

You can never rule anything out as a hypo symptom, because anything can be - and probably is - a hypo symptom. They could all be something else, too. But when you have a whole heap of them... what are the chances that you have 10 diseases with one symptom each, rather than one disease with 10 sympotms? Logic rather says the latter - i.e. hypo.

Thyroid hormones are needed in every single cell of the body. Therefor too little - or too much - hormone means that anything can go wrong anywhere in the body. Another thing doctors haven't been taught.

We really have to do our own research and be responsible for our own health, rather than just taking a doctors word for it. We end up knowing more than them! lol

Hugs, Grey

[CarolineC57 in reply to greygoose]

Thanks Grey. I just lost confidence in what I was doing (ie. self-treating, with Dr P's advice) when someone on my other thread asking for comments on my blood test results seemed to be saying the same as the NHS - the TSH is fine therefore I'm not hypo. I think the weight of opinion seems to be confirming what I'd originally thought to be the case.

[greygoose in reply to CarolineC57]

Good! Hope you find your perfect dose soon!

[HarryE]

I had severe pain in shoulders and hips, carpal tunnel pain and painful feet. All resolved by treatment, which I had to myself as my tsh was 'normal' too

[foxglove in reply to HarryE]

Would you kindly let me know what treatment you used to ease painful feet? I am a martyr to this !

[shaws in reply to foxglove]

I think you need an increase in meds. If you have Plantar Facilities it is a clinical symptom too. This is a link which may be helpful.

youtube.com/watch?v=0PmoyEx...(Not working as expected?)

[estrellaliliana in reply to shaws]

The first pain I experienced with hypo without knowing I was hypo was pain on soles of feet, not only on heels, the whole soles, like if I was walking on crushed glass ( a little bit), doc said it was plantar fasciitis. I am absolutely convinced that that pain was NOT plantar fasciitis, it is a pain on soles of feet that there's simply no name for it, so anything under feet they call it plantar fasciitis. I KNOW I DID NOT HAVE PLANTAR FASCIITIS. Later with thyroid meds and right dosage that pain disappeared.

[shaws in reply to estrellaliliana]

Lots of symptoms/problems, thankfully, can disappear when on optimum medication for us. I'm glad yours disappeared as well.

[HarryE in reply to foxglove]

It just resolved on thyroid treatment, as did my other 46 symptoms

[CarolineC57 in reply to HarryE]

Thanks Harry. When you say "resolved by treatment" do you mean thyroid meds?

[HarryE in reply to CarolineC57]

Yes, thyroid treatment resolved all my symptoms, and took me completely back to how I was before. I had to do it myself though, the NHS wouldn't treat me at all

[CarolineC57 in reply to HarryE]

Wow! Hope I can eventually achieve this too.

[Ansteynomad]

So your TSH is below range and your FT4 is at the bottom of the range - well that screams secondary hypothyroidism to me and I think you should do some research and go back to your doc.

Before I started treatment I felt as if every muscle and every joint in my body hurt, all the time. A work colleague said I walked as if I had been shot in the leg when I got up after sitting at my desk for a while.

Now fixed on 125 mcg of thyroxine. The relief is indescribable.

Do your research and go back to your doc.

[CarolineC57 in reply to Ansteynomad]

Thanks Ansteynomad. I'm self-treating with NDT and adrenal support after seeing Dr P privately - my GP doesn't want to know as my TSH is within range. But I'm still - even with these latest results - feeling very ill indeed.

I thought that TSH was normally high with hypo? The problem is, the more I read things the more confused I seem to get! Definitely someone on my other thread with the full blood results suggested that, as my TSH was now suppressed, I shouldn't be on NDT and probably wasn't hypo! I have to say that's just one person who said that - but it certainly confused me further.

As I said to Shaws above I'm going to make it a priority this weekend to write to Dr P with all my results (bloods and adrenal) and see what he says. Meanwhile, I've reduced the NDT to just one grain (I get palpitations when I go higher) and also reduced the NutriAdrenal a little as my adrenal stress test showed cortisol levels which were too high.

[helbell]

Hi Caroline,

I was diagnosed with fibromyalgia over a year before discovering myxeodema. It wasn't until I started noticing overt hypo symptoms like weight gain, hair loss, low pulse low temp etc etc and begged for another thyroid test that it showed in the labs ranges. Whilst under FMS diagnoses I had all over pain in every limb and joint...stiff painful joints and painful muscles and host of other symptoms plus nearly being immobilized too many days for months on end. Since taking thyroid hormone a huge reduction in pain and low energy levels. I have a long way to go with it and it's an up an down journey but I never want to go back to where I was last winter. Good luck to you and yes, keep doing research and trust Mr P. Only a trial of thyroid hormone will tell you for sure. Lucky you are under Mr P....I am flying solo...not recommended but oftentimes unavoidable. BTW it took about 6 weeks for me to feel benefits. Plus, I believe, our bodies take some time to recover from damage esp if you have got to the chronic pain and sluggish level.

[CarolineC57 in reply to helbell]

Hi Helbell - your situation and symptoms sound pretty much the same as mine. I was happy to accept the fibro and ME diagnoses until I started getting other unexplained symptoms like hair loss, etc. That was when I started to do some internet research and found that *all* my symptoms fitted hypothyroidism perfectly.

But I've been taking NDT and adrenal support after advice from Dr P for over 2 months now. There seemed to be an initial improvement in my symptoms but now I'm worse than ever. This is why I'm so confused - I seem to be getting worse not better, and my recent blood and adrenal stress test (posted on another thread yesterday) seem to contradict what I expected them to be.

Anyway, will write to Dr P with all my results at the weekend and see what he says. Thanks again!

[helbell in reply to CarolineC57]

What is your NDT dose? I wonder if you are not raising enough, or soon enough.

This thread might help re TSH.

healthunlocked.com/thyroidu...

last time mine was tested it was 0.O6

[CarolineC57 in reply to helbell]

Here's the problem re NDT dose. Because I've never been put on levo and have been ill for a very, very long time (since the 1990s) I started on just one-quarter grain and worked up slowly over a couple of months to one-and-a-half grains. However, once I got past one grain I started to get palpitations. I've now reduced it back to one grain and I'm leaving it at that dose until I can get further advice from Dr P.

I'll take a look at that thread you mention. Thanks!

[estrellaliliana in reply to CarolineC57]

good, you don't want heart palpitations.

[helbell]

Sounds like a wise plan. I started NDT May, this year. Had a great summer but went down a bit in autumn and now suffering hot and freezing cold sweats...time for blood tests. I live nr Bristol but I think Dr P might do tel consultations. I'll check.

[estrellaliliana]

carolinec57 I did not read all replies but pain may be different for a lot of people. What you have sounds like arthritis or fibromyalgia. I have hypo and fibro so I cannot say what's the pain for each of these diseases. I do have also muscle pain sometimes. What I really recommend to you is to eat everyday ginger root, in your juicing or whatever. And if you can take curcumin it would be helpful too, all for pain, ginger helps for arthritis. good luck