History:I was diagnosed in February 2019 with hypothyroidism after being severely poorly in hospital with recurring infections from November 2018.....someone failed to do a thyroid test despite it running in the family 🙄Anyway, I was subsequently diagnosed with hashimotos in Feb 2021 after never being tested previously.
Issue:
I was quite ill in October last year (although it started slowly in the june) resulting in a spike of my TSH and my meds were increased as per the above.
However, I have started to feel unwell again.....loss of appetite but losing no weight, heavy limbs, fatigued, unable to exercise, shortness of breath etc etc. I saw the GP today following my recent over 40 bloods as despite them being "normal" I don't feel well, the key thing being my thyroid is swollen and I have a hoarse voice again, as well as the above (I've had 2 scans previously, have some nodules and a partly damaged thyroid).
Prior to this month I had been feeling quite well at the December 22 levels into he attached table, so assumed these were my happy ranges. The GP dismissed my concerns immediately but I argued about the broad range and "what normal actually is". I also moaned because I've had no vitamins tested for ages or T3 at all on the nhs. She said she would speak to an endo to see if she could increase my meds and/or refer.
I left the surgery and less than 45 minutes later the doctor rang and said the endo said no to both and it is nothing to do with ny thyroid as they aren't even the symptoms associated with it 🤔 that was quick and complete crap as they're all listed on nhs and thyroiduk pages and the same as Ive had for 5 years!! However she has said she'll do more bloods - whether that includes T3 remains to be seen.
Am I going mad? I've never felt stable and despite all my research and fighting my corner I'm getting nowhere. I know I feel unwell and nothing else has ever shown in my bloods. I already take B12 spray at 1200ug, Vitamin d at 50ug, selenium 200ug and a multivitamin the doctor recommended to "top me up". I eat a great diet with all the things hashimotos and my thyroid need, I don't drink or smoke, I exercise at the gym 3 times a week (when I'm well) and have a healthy weight for now.
Any advice would be greatly received. Hope the format of my results is OK too. Sorry for the long post. I'm 40 and feel like a 90 year old and am getting nowhere fast.
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PurpleChez
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Your GP doesn't need Endo permission/ involvement to increase your dose based on your last results......
jun:
TSH 3.15 ... see below GP should be aiming to keep it under 2/ 2.5
fT4 18 [12- ?]...assuming your NHS fT4 range is 12-22 ? then your fT4 has room to be increased.
As long as both TSH and fT4 stay within lab ranges there is no need for a GP to ask an endo about a dose increase. (in fact most Endo's would send them away with a flea in their ear if they asked )
Show GP these references . some are taken straight from GP update sources , one is written specifically for GP's advice by Specialist Registrars in Endocrinology and Cardiology... so there should be no argument about their validity .
All of them recommend GP's keep TSH between 0.4/0.5 and 2/ 2.5 in ALL patient on Levo . So your TSH is currently too high to be optimal, and your GP should increase your dose to either 112.5mcg or 125mcg .
Trust your own experience regarding your individual pattern of symptoms of hypothyroidism ..... most GP's and Endo's wouldn't know a thyroid symptoms if it jumped up and bit them on the a**e ( to be fair they don't bother teaching them about the wide variety of possible thyroid symptoms anymore , ... ever since the TSH test became so dominant for diagnosing hypothyroidism they don't think GP's need to know much about symptoms )
p.s . your TSH appears to be rising again , which is a signal that the body is asking for more thyroid hormone . so that fit's perfectly with you starting to feel unwell again.
Are you aware it is best to do thyroid bloods as early as possible in the morning eg 9 am ,,,and before you take that days levo dose ( take it after the test )
Also don't have breakfast inc. tea /coffee before test . just water .
Keep consistent conditions for each thyroid blood test .
This protocol allows GP to see the highest TSH level of the day, which helps with getting does increases when needed. TSH falls naturally throughout the morning until it's lowest around 1-3pm each day, eating breakfast can lower it too..... and taking Levo shortly before the test will show the peak level for fT4 ,but you want to see the stable base level after 24 hrs, not the rapidly changing peak
Receptionist's and GP's won't agree that early am fasting tests are needed for thyroid tests , they are told to keep these slots for other tests the NHS thinks need to be fasted ... don't waste your time arguing ,just say you can't make an appointment after about 9.30 because you have to be at work,
it is worth waiting a few weeks if necessary to get an early am test when you need a dose increase if you have a GP who is saying 'TSH anywhere in range will do'.
Thanks tattybogle. Yes I'd read about the early testing so for the last 2 lots of tests I've had 8.30 appointments then taken my levo afterwards so its consistent.
I've never been able to get my TSH anywhere near optimal before my T4 hits the top of the range (yes it is 12-23 on nhs). I just don't understand their approach at all given its an exact replica of what happened last June and they ignored that too.
I've got more bloods on Friday where they'll hopefully do T3 as the doc stated, but I suspect it won't be on the card following the alleged endo conversation. I suspect the whole picture wasn't passed over. Plus my vitamins etc and then I'll ask to see a different GP if they're all good, which I suspect they won't be.
I went in an advocated and gave evidence but they really don't like being challenged!! Thanks for your response. I'll post an update when they come back!
a multivitamin the doctor recommended to "top me up".
We really don't recommend multi-vits on here. The last thing they're going to do is 'top you up'. I know they sound a nice idea - all those nutrients in one little pill. But, 'little' is the word. The pill isn't big enough to contain enough of anything. And taking two will give you too much of some things, such as calcium.
Apart from that, they usually contain the wrong form of most things, because they're cheaper, and things you really don't need, like iodine - that is the worst thing a hypo could take and could be part of your problems if you multi contains it.
What's more, the nutrients are very poorly absorbed because they compete with each other. So, all in all, rather than 'topping you up', it's just draining your purse. I would give it up, if I were you and just take the nutrients you need.
I take it you've had your B12 and vit D tested before supplementing? What about folate and ferritin? They could also be low and causing symptoms.
Do you take a B complex with your B12? All the Bs work together and need to be kept balanced for any of them to 'work'.
Do you take magnesium and vit K2-MK7 with your vit D? Vit D won't do you much good without magnesium.
Unfortunately, doctors know nothing about nutrients - they don't learn about them in med school. So, as a general rule, never take advice on nutrition from a doctor. They can have some very peculier ideas.
I agree they definitely have some peculiar ideas!! I had B12 and vit D done ages ago and the doctor recommended supplements as I was at the low end. They've tested for nothing else since, so hoping they listened today and my Friday bloods actually contain vitamin checks and then I can go from there. If not I'll do a medichecks one and respond appropriately.
Notes on the multivitamins thank you! No point wasting time or money! Will post results as I'll likely need help with what to take and when. Really appreciate your time x
Just checking, are you vegan or vegetarian? Your B12 is terribly low especially if you are using a B12 1200mcg spray.
Have you asked your GP for tests for pernicious anaemia?
D3 is good but add some K2 to help it go to your bones.
Do you have any ferritin or iron results?
Your folate is also too low. We need OPTIMAL vitamins for our thyroid hormone to work well.
Your TSH is far too high at over 3. Best to aim for 1 or just under where most people feel well.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test. It’s worth trialling a strictly gluten free diet to see if it helps symptoms.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
No I'm not vegetarian or vegan, my diet is really good with lean meats, plenty of fish and seafood, eggs etc, but its always been low. I've got no recent results but hoping to have ealry next week as I have more bloods on Friday where I asked them to test all of these vitamins as they've never really bothered and something is off.
I followed the blood protocol as I'd read that a while ago on here, to ensure they're always done on the same basis, so that bits good.
Yes on the antibodies, I do have hashimotos. They did test for pernicious anaemia, coeliac etc in December but all negative. I've not gone fully gluten free but I naturally don't eat the main culprits. One to think about thank you! As for dairy, I don't drink much milk or eat much cheese, chocolate etc.....just a yogurt a day so low dairy anyway for the most part. I did a lot of research on hashimotos after my diagnosis and adjusted a lot of my diet and it helped for the last 4 months then bang......all feels undone despite ne changing nothing!
I will post my vitamin, iron etc when the next bloods come back and hopefully you can help when you see those. Thank you for taking the time, it is appreciated x
If they've tested for coeliac then you should really trial a strictly gluten free diet to see if it helps symptoms. It won;t work if you're still eating even a tiny amount of gluten occassionally.
You might want to post and get advice on the Pernicious Anaemia group here on HealthUnlocked as they might have further tips on getting a diagnosis. The reference range is too wide and cut off too low.
Hi all, just an update, I put a complaint in to the doctors after seeing 3 GPs and banging my head. The head GP has seen me today and upped my meds and apologised for the cock ups! Thanks for all your support xx
Could not have done it without all the links on this page outlining what should happen. Just glad they finally listened......let's hope the meds work now!!
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