Another wall to climb

I posted here some time ago that my wife had finally found a doctor who would listen to her regarding her ongoing thyroid problems. He had ordered a new battery of blood tests which confirmed that she had Hashimoto's. She's previously had issues with taking T4 and he was open to the potential for prescribing T3.

However, unfortunately the GP wasn't confident enough to prescribe on his own and so wrote to an endo with my wife's blood values (she is sub-clinical hypothyroid) and her symptoms (she has lots - weight gain, mood swings, tiredness etc etc). He also explained in his letter that she had previously had a bad reaction to T4.

The letter that came back from the endo was short, terse and utterly disappointing! The doctor was so annoyed that he showed my wife the letter and expressed his disappointment in the response. The endo's letter can be roughly summarised as:

- She's sub-clinical therefore should only be treated if absolutely necessary

- If treatment is absolutely necessary there is no alternative to T4 - any bad reaction is highly unlikely (suggesting that my wife is lying??)

- Given her sub-clinical blood values it is unlikely that the symptoms are as severe as she says (again suggesting that my wife is lying??)

There was no mention of her positive test for Hashimoto's anywhere in the letter.

Although annoyed, the doctor wasn't prepared to go against the endo and therefore prescribed her a relatively small dose of T4.

My wife was devastated - she thought we were making progress and then we've been present with this. Although the progress that she's made is clear by the fact that there were no tears and she didn't decide the go off doctors completely. Instead she's trying the T4 and is focused on a low GI and dairy free diet.

She has another blood test after Christmas and although I'm praying for some positive impact on her blood values I think (although this might be my own in-built pessimism) that some of her symptoms have got worse. Fortunately, should her blood values show no change I think we're both up for a protracted fight to get her treated properly.

However, I can't help but be crushingly disappointed - I though we were making progress.

15 Replies

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  • If I answered as I felt, my response would be deleted for bad language.

    I suggest that what you can do is ask for your wife to be tested for some of the other things we so often see alongside Hashimoto's. These include:

    Viatmin B12

    Folates

    Vitamin D

    Iron and ferritin

    Please get a hard copy of all relevant test results - including actual numbers and reference ranges. She is entitled to ask for them:

    thyroiduk.org.uk/tuk/NHS_In...

  • @Helvella - thankyou, I'm sure our doctor will have no issue with that, he is supportive but feels his hands are tied.

    Thank you for the advice on other tests, we will pursue this at the next consultation with the doctor.

  • As far as I am concerned the proper definition of sub-clinical is:

    Blood tests in range AND No presenting symptoms

    Clearly the endo has a different view.

  • Poor you and your wife - she is so lucky to have someone on her side like you who a) takes an interest, b) is well informed and understands and c) will help her in her battle for health. Sending her gentle hugs and best wishes in the struggle with arrogant endos.

  • Hi Ed

    I'm so sorry to hear this. :-(

    Is there any way that you could take your wife to one of the Private GPs on our list? Perhaps your GP would be willing to listen to recommendations from one of them?

    The office is closed now until 3 Jan, but I can arrange to email you a copy before then if you like. Send me a private message with your email address if you are interested and I will sort it asap...

    Click on my name and then 'send me a message'.

    Make sure that your wife is keeping a diary of symptoms vs bloods vs dosage and meds. Rod is right about the extra tests.

    Did she find any particular thyroxine better than another? I was just wondering if she had tried liquid levo or there is a compounded one which contains T4 and just one other ingredient - I can also email info on this.

    The only other suggestions I have are to change GP AGAIN or ask him to get a second opinion. There are a few of people on here with 'good' endos.... Check out the hospitals section.

    Finally, just a pointer, if you want to reply to someone in particular, you have to make sure to click on 'reply to this' otherwise they will not get an email letting them know that you have responded. :-)

    Louise

    xxx

  • Hi

    I am new to thyroid uk and thanks to Louise I am now seeing a private specialist. I know how lucky I am to be able to afford it. I am 33 and have 2 little girls 3 and nearly 2 and I work part time (with GPs ironically!). I have an underactive thyroid and hashimotos and as I have been so unwell for the last 4/5 months am being tested for other things such as cushings, lupus and other autoimmune diseases. My dad had many autoimmune probs which are hereditary. He died in his 50s as he didn't manage his conditions when he was young so it led to many complications later in life. This of course makes me very aware of my health issues.

    Ed, I am so sorry for you and your wife. I have always been fit, healthy and happy and have never been as low as I have been. I have been advised that if all else fails go to A&E as they have to test for everything relating to your wife's symptoms. Worth a try?

    I hope all of us suffering take some comfort in knowing we are not going mad and not imaging it!

  • Have you ever asked your wifes doc if he would be open to her self medicating. Some people on here say their GP's are o.k. with this.

    I am on a T4/T3 combo and have been for about a year but I, like others on here and your wife, am having trouble with the T4. When my doc first agreed to give me the T3 I asked her if I could go T3 only but she flately refused. I am now going to go back to her to ask again, if she refused I will then be asking (or telling) her that I will be buying extra T3 from abroad and self medicating if she wont allow me to have a 2 month trial. I will then put to her that surely it would be better if she had totally control and monitoring over my meds rather than me going down the self medication route.

    Its worth a try and you never know it just might work.

    What a kind and understanding husband you are.

    Moggie x

  • You are amazing the way you fight these doctors. I found it easier to go to a private one for my treatment. I think endocrinologists and doctors who refuse to treat should be named and shamed. How could a supposed specialist know so little about the disease?

  • It certainly is amazing - it also isn't limited to endos. I've had similar experiences with a musculo-skeletal specialist :(

    I should emphasis that our GP is actually excellent, he's been really supportive but obviously he isn't a specialist and feels he needs to follow the advice of the specialist, although he was very annoyed by the advice. I hope that he will be open to taking a second opinion/trying other options if the next round of blood tests shows no change.

  • Trouble is you cant name and shame a GP or endo that is following government guidlines and there lies our biggest problem. That and the idiot "specialists" that set the guidlines in the first place.

    Moggie x

  • Thanks for the comments everyone - it means a lot to be able to vent a little bit on here!

  • write to the medical association and complain about that endo it may not get immediate results but they have to look into it

  • Im so sorry but that is typical of what we are all going through. the latest with mine is "we do not test for nor treat T3 as its not neccessary

  • I can't understand how the gp's and endo's seem to be SO behind. There seems to be such a difference between what the patients themselves know and how the endo's treat. America is better but even they have the same problem. I went to see an endo this week for the first time. The endo laughed at the referral letter from the gp in reference to my concerns with low cortisol, by chance I knew the consultant that came in to check on what she was doing, and he was happy to suggest an ACTH test which I hear from here that this is only good to rule out addisons which they have said they are not worried about due to renal condition being in good condition. The endo asked me about my monthly cycle and I said I get migraines, and his suggestion? That if they debilitate me he can give me medication to stop them??? And due to my joint pain said in passing that I may have fibromyalgia. How about instead of giving medication for my periods and pain relief for fibro don't they recognise that the levothyroxine is NOT adequate. When I asked about t3 and ndt she said nothing at all about t3 and said it is very very rare they perscribe ndt. The only thing I have gained from the appointment is a scan on my thyroid which is tonight. The male endo who I recognised-guess what he is doing in his spare time? He's going to be a local mp!!!!!!!! How about reading into thyroid conditions!!!! How is this poor treatment acceptable? Makes me feel vulnerable and very cross. I am left in a position where I feel to poorly to work, but I need to work to keep my home, getting into debt is the only option for me to get well. I didn't realise how poor the NHS was. What can we do about it? If I win the lottery I would do all I could to help thyroid patients. I Hope you and your wife find the answer, and find the care you are hoping for. If I was in a position too I would go private, as health is priority, it's a shame we are put in this position. Sarah

  • I would also take them to court and sue them for professional negligence. The specialists are supposed to keep up to date with current (and past) research. Pack of wooden tops. I cannot understand how they can be so stupid. They really do look at symptoms separately and treat them separately rather than realising that these symptoms are all part of the same disease. Doh....

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