Hip surgery cancelled due to thyroid results

[lisagrimmo]

Hi everyone. I'm appealing to your collective knowledge to see if anyone can help. I have been taking 150mcg levothyroxine for 15 years with stable blood test results every 6 months. I had my pre op appointment for my hip replacement on 21st May. It was cancelled due to bloods - TSH was 17.4 & T4 was 11.8. I was sent to an endo who increased by dose to 200mcg which resulted in TSH 0.01 & T4 28.3! He now suggests I go back to original 150mcg but wont that just put me back to square one? I am in a lot of pain and desperately need the surgery but the consultant tells me that without a stable thyroid the anaethetist wont consider it. Any ideas?

[shaws Administrator]

Welcome lisagrimo

I should think you've been neglected over the years, particularly having a blood test every six months and yet your pre-op TSH was 17.4. No wonder they were reluctant.

I wouldn't have much faith either in the Endo you saw who now wants to reduce your dose again due to it being 0.01. If you are feeling o.k. with your new increase I would see the surgeon again re your hip op.

Most of us on this forum feel much better when our TSH is around 1 or lower and some of us need it suppressed. Some Endos mistakenly believe we will have heart problems etc if it is suppressed but Dr Toft ex President of the BTA says some of us need a suppressed TSH to feel well.

The Endo should maybe not have increased by 50mcg as usually the increase is 25mcg each six weeks but if you feel o.k. I think everything would be o.k. bearing in mind I don't have medical training but I have a daughter who has had knees and hips replaced.

I hope your op goes smoothly as I'm sure it will.

When you post in future your blood results, if you can also put the ranges (the figures are in brackets, the reason being that labs differ throughout the UK and it makes it easier to comment.

[lisagrimmo in reply to shaws]

Oh yes sorry, it makes sense to put the ranges in. I agree that I have been neglected and messed around by various medical professionals. It drives me crazy that they all contradict each other but its me who suffers. One surgeon said he would operate if just the T4 was within range while another surgeon insists all 3 results (TSH, T4 & T3) are stable! Its impossible to know who to believe. Thanks for your help though and for welcoming me to the forum.x

[lisagrimmo]

Wow thats so informative. Where will I get these specific tests from? I think i would need to pay private if, as you say, NHS labs wont test T3. I can try first asking my GP if he will do them as I don't have much faith in the Endo. I read a lot about T4/T3 conversion and even asked my GP about 10 years ago to prescribe Armour but he refused outright. I will push on with getting these tests done. Thanks so much.

[Hidden in reply to lisagrimmo]

You really have been messed about Lisa - sympathies.

As one of your surgeons wants to see a complete panel (well, TSH free T3 and freeT4 anyway) of satisfactory blood test results before doing your op you have excellent ammunition for insisting that all 3 tests are done. It is purest cobblers for NHS doctors to claim that they cannot have free T3 tested - and to blame it on the labs. I had free T3 tested in January without even having to jump up and down! Mind you - I was astonished. But it goes to show that they *can* do the test. Even if your GP or whoever has to send the sample to a different lab.

BTW - to increase your meds by 50 mcg in one go is a *big* jump for your body to assimilate. Someone else has suggested going up to 175 as an interim dose. That's a good idea. Even smaller increments might be better - 12.5 mcg (lots of cutting up of pills required to do that, of course). And bear in mind that T4 only meds take quite a long time to settle to an optimum state - weeks. This isn't good news for you, who wants your op as soon as possible. Sorry.

[silverfox7]

Sorry you are in pain with your hip. Having been there I know how debilitating that is. I am petrified of doctors and hospitals but I attended a pain clinic and had a steroid injection. It didn't work for long but it made me realize how bad I was and how beneficial a new hip would be. I gathered my kids together to say I wanted to spend their inheritance and have it done privately as I knew the waiting time would get to me so from seeing the consultant I was in theatre 3 weeks later. My doctor may well have put in my referral that I was stable on thyroxine-well she would think that but he didn't try to push me into surgery. I walked, limped out with the options of doing nothing-not an option with the pInetc, having it done on the NHS but in the private hospital with him doing it but in a shared room rather than a private room or paying which would mean my own room plus a consultant anaesthetist. I asked if I could have a spinal block rather than a general and I was told yes and I understand that is better for heart problems, not that I had any, so that could be an option for you perhaps. I was sedated and I remember little bits of the op but I just closed my eyes and drifted off again.

I was pretty sick with the morphine but home 5 days later and already an expert at getting up and down stairs!

Unfortunately I got a PE and was told if I have the other one done I would be on blood thinners for longer as that had already been implicated with other patients. The hip has been wonderful-don't know now why I left it so long and was nearly 6 years ago now. The other is starting to give the odd twinge. The only thyroid problem I had was in the NHS hospital with my thyroxine. I insisted on taking my own medication as was on a named brand but the pharmacist came to see me the night before discharge to make sure I knew how to take my medication I'd been taking for 20 years! By this time I was in my own room as had picked up the narovirus and was barrier nursed! But stupidly as the NHS is skinny, I had to take home some of their Levo even though they knew I wasn't going to take it as rules say I have to leave with medication etc!

I do hope you get your hip done soon, good luck!

[Glynisrose]

NEVER reduce your meds based on blood tests alone!

[Muffy]

You could try 175mcg per day.

[lisagrimmo]

Thanks SO MUCH to everyone for your insights. I went back to my GP as you suggested. I told him about this forum and the info I had received and asked him to do another blood test showing TSH, T4 and also T3. He actually agreed this time and here are the results;

FREE T4 - 20.2 (NORMAL = 10 - 24)

T3 - 5.62 (NORMAL = 4 - 8.3)

TSH - 0.014 (NORMAL = 0.4 - 4.5)

So finally my T4 is back within normal range but what is happening with my TSH? It seems it is never normal regardless of what dose of thyroxine i take. I am still on 150mcg levothyroxine daily and my GP is happy for me to continue this dose but how can I get my TSH to normal range WITHOUT sending the T4 & T3 spiralling out of control?

[Hidden in reply to lisagrimmo]

Normal isn't necessarily what's right for you. F Y I people usually feel best when test results look like this:

TSH: bottom quarter of range

Free t4: top half of range

Free t3: top quarter of range.

Many people feel at their best when TSH is 'supressed' (under range) as yours is, so I wouldn't worry about it being too low. And your doc doesn't, otherwise he would want to reduce your meds.

However, to me your free t3 looks a little low and your free t4 a little high. Which to me suggests that you aren't converting T4 into T3 as well as you might. The remedy for that is to replace some of the T4 you take with T3.

What do others make of these labs?

[lisagrimmo in reply to Hidden]

Hi Humphrey, thanks for your reply. My consultant seems to be ok with the T4 result which is all he needed to go ahead with the hip replacement surgery so am not going to rock the boat and bring it to his attention as I cannot walk now so I really need the operation desperately. However, I had been thinking something similar myself regarding the T3. Unfortunately my GP will not prescribe T3 for me as he says the result is within normal range even though I continually tell him I feel no improvement whatsoever. Do you know if I can buy T3 over the counter or online?