18 months ago I had a total thyroidectomy due to a multinodular goitre. My mother had had thyroid cancer, so my doctor considered that it was best to remove mine. Before then, I had multiple hypo symptoms but my T4/TSH were always normal.
Since having my thyroid removed, my GP has "stabilised" me on alternate 150/175mcg Thyroxine, but I've felt dreadful. I've kept going back complaining about aches, pains, lack of sleep etc....to be told it's down to stress and age (i'm a 49 year old female). I requested T3 test, and was told that this cannot be done in our area. I requested referral to an endo, and was told that it's not my medication that's the problem...and that I probably have fibromyalgia. I was prescribed antidepressants and referred to a rheumatologist.
Well, I went to the rheumatologist yesterday, and pointed out that T3 had not been tested and that I thought this was the cause of my pain. He told me that I was adequately medicated and was therefore barking up the wrong tree. There is, apparently, no need to test T3 or reverse T3 because my T4/TSH are perfectly within range. I obviously don't understand how the hormones work!
He then went on to ask me how supple my joints were as a child/teenager. I explained that I used to be able to get myself into some very strange positions in Yoga. Then he said "Well, that's your problem". Eh???? What's my problem? "You've got joint hypermobility syndrome because you were flexible when you were younger" LOL. He's suggested that I visit a sports physiotherapist, who'll be able to sort me out (at a cost because it's his friend and she's private).
So....back to the drawing board. Private blood tests and another battle ahead with my GP to try to get a referral to endo.
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traceytired
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Hypermobility in children usually improve with age. Occasionally you can have pain with hypermobility and there is no explanation to why this happens (as far as I know). Sometimes you can get increased stiffness in adulthood after having been hypermobile, but many people get pretty stiff as adults anyway. Unless you abused your joints a lot as a child and teenager you should not have any problems as an adult. I think it sounds like he is trying to give a new diagnosis to something that sound like it is very obviously under treated thyroid. Its like getting the diagnosis ME or depression that many of us end up with.
In my other life I used to be a children's physio so I know about hypermobility and associated pain. You could try physio but he/she is very unlikely to know anything about thyroid and pain unfortunately. I would just do gentle exercise e.g. swimming and try to insist on seeing an endo.
Just to add, 150/175 mcg seems very low for a total thyroidectomy, I would be totally unable to function on that. Your TSH should he under or at the lower end of range. have a look at Dr Tofts book
Completely agree! TSH should be below 1, or suppressed in some cases, and T4 should be at the top of the range, or above in some cases, provided T3 is in range.
I have a greyhound, so I'm forcing myself to go out for a daily walk, which is enough for me. It's an endo I need, but my GP is very reluctant to refer me.
Hi Tracey,
Would you be able to post your most recent blood results here, along with the reference ranges for your laboratory? It would also be useful if you have any previous test results for comparison. Although you are still symptomatic, have you noticed an improvement in your symptoms as your dose was increased?
>I've kept going back complaining about aches, pains, lack of sleep etc...
When did these symptoms appear (old or new)? Do you have any other distressing symptoms which you haven't mentioned? For example, do you get very dry skin, or dry eyes? Do you suffer with constipation? Have you noticed a change in your appetite or weight over the last 18 months?
>to be told it's down to stress and age (i'm a 49 year old female).
By age I assume he is referring to the menopause. Are you periods still regular?
Fatigue and aches/pains are very general symptoms of ill-health. There are a huge number of causes as well as hypothyroidism. It is therefore vital to assess other aspects of your health. Do you know what other blood tests your GP has performed?
Apart from assessments of thyroid function, common tests for patients suffering chronic fatigue and body pains include......
Urea, electrolytes and creatinine (U&Es)
Full blood count (FBC)
Liver function tests (LFTs) including GGT.
Calcium level (and corrected calcium)
Phosphate if bone disease is suspected, and sometimes magnesium.
Fasting glucose level. HbA1c may be measured instead in know diabetics.
Ferritin, vitamin B12 and folate (or preferably red cell folate if available). Ferritin is the standard test for iron deficiency. Serum iron is only tested in special circumstances.
Vitamin D level (25-hydroxycholecalciferol)
Early morning cortisol level to assess adrenal function
Inflammatory markers (ESR or plasma viscosity, and sometimes CRP)
A 'menopause test' may be performed in some cases,
A 'monospot' test - only in patients like to have glandular fever.
A Coeliac screen is appropriate in some cases, particularly if vitamin deficiencies are identified or gastrointestinal symptoms are present.
Urinalysis may be appropriate if renal disease is suspected, but in most cases it is not.
Fasting lipids (cholesterol etc) are often tested too, simply as part of a general health screen.
> I requested T3 test, and was told that this cannot be done in our area.
Because you have no thyroid gland, all the T3 in your body comes from peripheral conversion of levothyroxine to T3. It is therefore likely that your serum T4 level will need to be right at the top end of the reference range or slightly above, in order to normalise T3 levels. Do you know what your fT4 level is at the moment?
>my GP has "stabilised" me on alternate 150/175mcg Thyroxine, but I've felt dreadful.
How do you take your levothyroxine at the moment? Do you take it on an empty stomach, first thing in the morning? All vitamin/mineral supplements should be taken at a different time of day. In particular, iron supplements and calcium should be taken several hours after levothyroxine.
Wow, Bob....thank you for the time you have taken to reply.
Serum tsh <0.05mlU/L (0.4-5.0)
Serum free ft4 20 pmol/L (9-19)
Serum lipids abnormal, not critical. Cholesterol 7.2mmol/L. HDL cholesterol 1.2mmol/L. Total cholesterol:HDL ratio: 6
Urea and electrolytes normal.
GFR normal
Liver function normal
Full blood count normal
The rheumatologist said my Lupus test was interesting and made no further comment. I have not got a copy of the tests he carried out, but he did say that I don't have rheumatism.
I take Thyroxine first thing in the morning on an empty stomach, and I do not eat for around 2 hours. I do not take any supplements at the moment.
Periods were always regular, but my last one was about 6 weeks ago, so I think I might have missed one now.
Aches in muscles and bones....worst during the night and first thing in the morning. Sleepless nights...generally go to bed at 11 and wake up at 4, with pain in back, ribs and legs, sometimes cramp in lower leg and foot.
Dry mouth, dry eyes, which my body seems to counteract by producing tears, so I look like I'm crying sometimes (and I haven't peeled any onions lol).
Very hard dry skin on heels and feet. I moisturise daily to keep the dry skin at bay on the rest of my body.
Constant headache...usually over my right eye.
Difficulty focusing at times.
Vitiligo on arms, legs and back - small white dots.
I've gained 18 pounds in 18 months and crave sweet food....especially chocolate.
I'm often constipated, but I find that eating beet root counteracts that.
Hard to concentrate. I have to take a break when doing something complicated, and I don't retain information too well now.
OK, it looks like you've had some basic blood tests via your GP and others via the rheumatologist. In spite of the strange hypermotility diagnosis, the referral was probably useful because he was able to rule out primary rheumatological disease, and more so because he didn't diagnose fibromyalgia! Hypermotility does not explain your fatigue, and since your GP cannot continue to blame fibromyalgia he might be willing to refer you to a different specialist.
>Serum tsh <0.05mlU/L (0.4-5.0)
Serum free ft4 20 pmol/L (9-19)
In the UK, routine testing of T3 is not performed when treating hypothyroidism. Measuring T3 levels is however recommended in certain circumstances. You *are* a candidate for testing because your TSH is suppressed. All laboratories should be able to measure free T3 or total T3. Free T3 is preferable where available, but is not offered by all labs. In that case, they should measure total T3 to check that it's within range. The relationship between thyroid levels and fatigue is complex. Excessive levels of thyroid hormones can cause fatigue and muscle cramps; it's not just under-replacement that's a problem. Overall, your symptoms are more typical of hypothyroidism. If your levothyroxine dose was excessive you would have probably lost weight.
The British Thyroid Association's guidelines, which your doctor can access online, provide an explanation of why T3 should be measured in your case. Here is an extract (see the final sentence in particular)....
"...Levothyroxine treatment......will result in the majority of patients becoming clinically euthyroid with a ‘normal’ TSH (using a dose of) 75-150 mcg/day (1.6mcg/Kg on average). This strategy will prevent over-replacement in patients and decrease possible adverse effects noted in terms of cardiovascular outcome..........
Other published guidelines recommend that the serum TSH during levothyroxine therapy should be targeted to be below 2.0mU/L.....It has been suggested that in a minority of patients clinical well-being can only be achieved if the serum TSH is subnormal or suppressed and that this is of no detriment to the patient as long as the serum FT3 is unequivocally normal." .....clearly, one cannot know whether it is normal without measuring it.
>When I came out of hospital, I was on T3 only for 6 weeks, and felt great....then GP changed me to T4, and I have gone down hill ever since.
You'd need to discuss this if you were referred to an endocrinologist. Most tend to be skeptical because although one clinical trial showed benefit from T3/T4 combination treatment, larger trials performed subsequently did not. In spite of the lack of trial evidence and the generally negative attitudes of endocrinologists, individual patients *do* report benefit. Concerns of cardiovascular effects might be brought up. A pre-treatment ECG would seem sensible.
Personally, I think it's well worth stressing your own individual (and very positive) experience with T3 with the aim of finding out whether they would consider switching you back to T3, or a combination of T3/T4.
Anyway, before you see an endo, it's probably worth making sure that your GP has done all the appropriate tests.
>Oh, and constant ringing in my ears is something I have developed in that past 18 months that I never had before.
Tinnitus is a rather difficult symptom to assess. It can be related to an under-active or an over-active thyroid, or nothing to do with thyroid at all. Have you seen an ENT consultant?
>(Vitamin B12) Would my GP test for that if I ask?
He might do, it's a common test. Some GPs reserve testing for patients with an abnormal full blood count but evidence now suggests that mild deficiency (ie. insufficient to cause anaemia) may still cause neurological and psychiatric changes. I think it would be worth getting tested for B12, ferritin (iron) and possibly folate. A recent study showed that a group of non-anaemic women with mild iron deficiency were still able to benefit from iron supplementation in terms of reduced fatigue. Excess iron is unsafe, so a test should be performed before using high strength supplements.
>The rheumatologist said my Lupus test was interesting and made no further comment.
You probably had a very low titre of antinuclear antibodies (ANA). This is common and doesn't seem to represent much if other tests are normal. Some perfectly healthy people have low titres.
By the way, I've had these symptoms for some years.....well before my thyroid was removed, but they sort of came and went. Thyroid function tests TSH/T4 were always normal, but my goitre was getting progressively bigger and lumpier. On removal, there was one 5.2cm dominant nodule and lots of smaller ones.
When I came out of hospital, I was on T3 only for 6 weeks, and felt great....then GP changed me to T4, and I have gone down hill ever since.
That's because you need some T3. Some cells need direct T3 rather than having to convert T4, especially in the brain. My brain function was the first thing I noticed improving when I switched to NDT.
Your GP has a duty to treat you and make you better. If he can't do that he should refer you to someone who can, i.e. and endo. Perhaps you can use that argument. "Do you know what's wrong with me?" "No" "please refer me to an endo". You've had a TT so he should refer you if you are no longer feeling well since stopping the T3.
Tinnitus can be a symptom of hypothyroidism. It can also be a symptom of B12 deficiency so it's worth investigating that too. If your level is below 500 I would personally want to supplementing with a substantial dose of B12 (methylcobalamin). If it's not below 500 it would still be worth supplementing with 1000mcg. Low B12 can cause a whole host of symptoms itself so it's a good idea to eliminate that as a possible cause.
Some will, some won't. They will only prescribe a supplement (usually injections) if your B12 is below range, unfortunately. You will have to buy your own supplements otherwise. I take a sublingual lozenge of 5000mcg methylcobalamin. 1000mcg is a good idea even if your level is above 500. Hypothyroid patients seem to need higher levels for some reason.
I have just been to see an Endo for a T3 test as my joints are very painful. I told him I also had a diagnosis of fibromyalgia. Whilst in his surgery he moved my joints in various positions, although sore he thought I was reasonably flexible and assumed my joints were not too bad but just because I can still lift my leg up doesn't mean I am pain free. It was hard to explain the deep pain I feel all over my body. The Endo then wrote to my Doctor saying he did not think the joint pain was related to my thyroid but was caused by the fibromyalgia, obviously not linking the two, which is what I had gone there for in the first place. He did say in his letter that he was waiting for the blood results which he had ordered including T3.
My heart will be in my mouth when I go back next month, depending on my T3 reading, if he does not link T3 to my aching joints then I am up a creek without a paddle and seeing an Endo was a waste of time. I will report more on this next month. I do like to be positive where I can but seeing an Endo does not necessarily bring the relief we are hoping for. Why is fibromyalgia looked upon as a separate condition. I have noticed this in Fibromyalgia support groups that few people make any connection to the thyroid, it is so frustrating.
Hi I'm 4 years down the line still sore been tested for everything told fibromyalgia when asked doctor how come I was fine up on till I got under active thyroid she tell me it not connected
Ps. I got a rheumy appnt she said its not fibro it's prob thyroid related!!!!! Went in massive 5 year circle and back to square one, gp never gave it a second glance what rheumy said I haven't been back l. Carry on as best l can. Got no faith what so ever!
Hypermobility does not just affect your joints but every part of you. It is due to faulty connective tissue called collagen. Here is a very good site for info hypermobility.org/help-advi....
Also people with thyroid conditions and hypermobility can very often have problems with B12 deficiency. Without sufficient B12 you body will not be able to convert T4 into T3 and stops and that is converted it will not be adequately absorbed in your system.
Hi I have joint hypermobility too and it's always been part of my life. Just to let you know Tracey that you're not on your own. Jo xxx
Thanks Karisma853. An update, though....I saw a GP privately, and he said that, although my thyroid bloods were within normal range, he felt that my Thyroxine dose might be too high. I have, therefore, been gradually reducing the dose. I am now on 100mcg daily, and the pains have reduced dramatically. I'm also taking B12 supplements and coconut oil.
I'm still not back to my old self, but I am sleeping at night, and I am feeling much better. Xx
Hi Tracytired a lot of people with hypermobility and thyroid problems are unable to absorb B12 in the gut, so taking B12 tablets will not make any difference as they will pass through your system without being absorbed. If you want to supplement B12 try one of the new B12 sprays. Also if you are considering being tested through your doctor don't take any frolic acid for about a month before the blood is drawn as it tends to distort the blood cells making it look as if your B12 is OK here is a good site that is packed with info
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