GP wants me to reduce my dose but endo said its fine.

Hi

I'm looking for some advise please. I was at the endo in May he said everything was good and I was doing well, I felt great the best I've been since being diagnosed, I was taking 150mg of Levo & things were settled so my endo said he would sign of my care over to the GP which I was happy with. I attend a transplant clinic every 3 months where I get my bloods done, about 4 wks after my last appointment the GP calls out of the blue and tells me to drop my dose too 125mg as he thinks it's too high & to call the practise in 8 wks to get my bloods done again. My question is if I reduce my dose for 8 wks will this be enough time to show up in results? How long does it usually take to show up? At this point I am really reluctant to change the dose as it's the best I've felt in years, my weight is stabilising , I have some energy and I'm starting get my life back together so why should I change it. I don't have my results from the endo or from my last transplant clinic appointment but they were only 5 weeks apart so I can't image they would be any big differences & I have no reason to doubt the endos judgement.

16 Replies

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  • Hi Babylola, Glad to hear that you're doing so well, and concerned that your GP is suggesting this without seeing you. I was diagnosed with Hashimoto's when I was 19, I'm now in my 60's. I have been taking thyroxine, 200 mcg per day for many years with no adverse symptoms. My GP has often said that my dose is too high, at which point I hold my arms out in front of me to show that I'm not shaking, I ask him if my eyes are beginning to show the results of hyperthyroidism, (becoming very prominent and bulging), and ask him if my heart rate is normal to low, which it is. If you are absorbing too much thyroxine, it can affect bone density, which might be what your GP is concerned about. It is possible to have a bone scan to check this, though it would probably take several years to have an effect. I've had a bone scan a few years ago and my bone density was fine. I now have Pernicious anaemia, and have been seeing more of my GP, and also a gastric specialist. The specialist also mentioned that my thyroid medication is too high, so again held out my arms in front of me etc., and said I was very loath to upset anything which is working well for me. He surprised me by saying that that was exactly what his mother says, (she also has Hashimoto's), and didn't raise the subject again. Another member posted a link in another answer a few weeks ago, Many thanks to that member)demonstrating absorption of different types of thyroid medication. The paper points out that people with low stomach acid are not able to absorb as much thyroxine from their medication, as those with normal amounts of stomach acid. Incidentally, low stomach acid is one of the symptoms of pernicious anaemia, which explains my experience. You just naturally might have low stomach acid, although people with thyroid problems sometimes later develop PA. If you are concerned, check the Pernicious Anaemia Society web page. If I am able to find the link to the paper, I'll reply again. So, take care, make an appointment to see your GP and explain how well you are doing, and ask him to check your heart rate etc. to make sure that everyone else is well. Good luck and all best wishes, I'll now look for that link. ๐Ÿ˜Š

  • See my post below....Yeah that doctor said I had broken ribs because the dose the endo got me on was too high (the opinion here was I had broken ribs due to being hypothyroid and untreated for scores of years!) I had that dexa bone scan and my bones were in the top 1% of the population so in tip top density! So much for her theory. I rapidly changed GPs. Turned out I had a massive vit D defficiency

  • Thanks for your reply I was diagnosed with pernicious anaemia back in Jan 16 and my haematologist put me on folic acid, I've been taking b12 & vit D also. I didn't realise low stomach acid was part of pernicious anaemia. I'm going to wait until I see the GP before I do anything, I feel good so I don't want to give that up. I am going armed with all the info I can get.๐Ÿ˜„

  • Babylola,

    The endo should have written to your GP with your long term health plan and any recent results that his dosing decisions were based on.

    Ask your GP if you can have a copy of this letter and also any other results for tests you have had conducted since. It is useful to keep a paper copy of all test results as this gives you a little control over what is happening.

    You are legally allowed to a copy of your test results but the receptionist may need to confirm with your GP first and some (miserly) surgerys charge a small fee for paper & ink.

    Your GP is probably wanting to mistakenly dose you by the TSH results regardless of how you are feeling but until you know your previous results, it is hard to fight your corner.

    Tests are usually conducted six weeks after any dose change as this is the time is takes for your body to saturate each cell with the additional added hormone.

    .

    Accessing your medical records

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

    You have a right to see your medical records under the Data Protection Act 1998. Guidance on The Data Protection Act 1998 can be found at:

    ico.org.uk/for-the-public/p...

  • Thanks, I will ask for the last few results to be printed next time I'm in, they always make me feel like I am asking for the impossible ๐Ÿ™„

  • BL,

    Only the last ones are applicable unless there have been any major changes in meds, dose or health issues.

  • When mine did similar I called my endo secretary and she advised I demand to go back to their care which they said was my entitlement.

    So I did that armed with my blood tests results from the hospital and the doctor immediately backed off - she had suggested a drop to a dose where my TSH had been excessively high and after 9 months of pure hell trying to get anywhere near feeling ok I was not going to take a stupid step backwards like that.

    Stand up to them - they aren't the ones having to live with the consequence of toying around with your meds based on test numbers not how a patient actually feels. Don't suffer any more than you have to with this dreadful disorder.

    I am sure they are not allowed to drop your dose anyway if you disagree.

    Good luckโ˜˜

  • Hi,

    Lots of great advice in the other answers, follow and also print out this document and go well prepared. The easiest way to view the document is to type:

    'A Comparative ph dissolution profile study of selected levothyroxine products ...' in search, and you will go straight to the document. Lots of technical info. but the graphs show how each of the products tested are absorbed under different conditions. There is a 'download pdf' button to copy the whole document.

    This is on Research Gate, documents are free but if you search using this you have to join, giving info. re company you work for etc. Again, All the best and Good luck.

  • Thank you, I will take a look. ๐Ÿ˜„

  • Unless you have hyper symptoms DO NOT lower your dose. Regardless of what your GP says he will only do a TSH test. This is not even a thyroid hormone. If it is suppressed the GP will try and reduce your meds. Resist!

  • Hi

    This happened to me... I was on 100mcg and happy on this dose and so was my NHS Endo. I am still under her care but when she wrote to my GP to say to keep me at 100mcg he refused. He wanted me to do alternative days at 75mcg and 100mcg. I didn't want to and the Endo asked him numerous times but he ignored her and my wishes.

    I had to leave his GP practice and go to a new one.

    Have you spoken to your GP? I would ring your Endo and express your concerns. Your Endo might be able to write to your GP.

    Good luck.... Freaking GPs!!!

  • My endo as written to him that's why I was really confused, I will get my last 3 results to see if there is marked changed & I will use this to support my argument. I feel good so I'm not reducing until he gives me good reason failing that I may change my GP if he ignores the endo advice

  • I needed a blood test from the endo and my GP so decided to have it done on the same day. I had blood taken, same blood was tested at same time, one for endo one for GP. The endo said to increase the GP said definitely not and said he was going to reduce my dose. Fortunately I had asked for a copy of the test results and the nurse asked if I also wanted a copy of the one sent to my GP. I thought it would be the same. No it wasn't. One showed high and the other showed low. What worries me is that I informed both endo and GP and as I had not heard anything after 3 weeks I phoned lab. I was told it was done on two different machines. I said I appreciate that, but they should both show high or both show low. After 10 minutes the senior lab assistant understood what I meant. But I doubt she did anything about it. I am disgusted with the endo and GP because surely they realised that any patients receiving results from the faulty machine is being wrongly treated, and did not care.

  • ๐Ÿ˜ฎ๐Ÿ˜ฎ๐Ÿ˜ฎ omg that's really bad! But something too be aware, I never thought something like that could happen especially on the same sample.

  • Lord knows how long it had been going on. I would not have ever found out if I had not decided I was going to do it atthe same time and if I had only got the results from one. A string of coincidences

  • We see some posts were the GP hasn't a clue and a few where the endobappearsxto be in the dark as well. So get a copy of your results and repost. I'm sure you will get a lot of help.

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