At the end of the week I will finally have a telephone consultation with a GP through having a good moan to a practice nurse when I went for my B12 injection.
I did have a moan to another doctor in early Dec when getting treatment for a flare up of a patch of lichen planus that I have on my shin. Was told then that my TSH was too low and perhaps I should reduce my levo. I refused but now need something to attack with.
I am still taking 5mg folic acid, Adcal-D3 tablets, 100mg levo and 20mg Atorvastatin as well as a 3 monthly B12 injetion.
I had a blood test with the GP in July last year - TSH 0.22 (0.34-5.44) and T4 16.7 (11-22).
A private blood test with Medichecks in Nov last year TSH 0.4 (0.27-4.2), T4 20.5 (12-22) and T3 4.1 (3.1-6.8). I was "smiled at sweetly" and told my TSH was too low and that there was no way I could have an increase as that "could cause lots of other complications."
As usual they only looked at TSH and would not take any notice of my private test - even though I think my T3 is too low.
What can I throw at them to make them (as they should) take notice of my symptoms and not rely just on a blood test.
I complained of fatigue, fighting to keep my weight at a level that I consider is above my ideal weight, balance problems, brain fog, no concentration and always cold to name but a few.
Many thanks in anticipation of all your help.
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mill44
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I would ask for a referral to an endo for a trial of lio. You still "feel" under-medicated, even though TSH is nice and low [not under-range, but even that isn't a worry once you are on thyroid meds] and free T4 is nice and high, because free T3 is stubbornly low - less than 1/3 through range, showing you to be a classic "poor converter".
You don't need to see the nearest person, but you DO need to see someone T3-friendly, so email Dionne at tukadmin@thyroid.uk.org for the list of T3-friendly endos and ask - in a sep post - for details of T3-friendly endos near-ish to you x
If it wasn't so very serious the ignorance of medics re thyroid disease would be laughable!
Clinical evaluation seems to be beyond many of them....they don't understand symptoms
Their patronising approach just underlines their lack of knowledge...a knowledgeable medic doesn't need to be condescending and evasive.
How much levo are you taking? Still 100mcg?
If so, firstly you need an increase probably more than one, if conversion is OK that should raise both Frees.
If you don't improve after those increases then it might be time to consider T3
Suggest you write a list of all you want to say to your GP as an aide memoire...that stopped me quacking like a demented duck when brain fog made an articulate conversation difficult! Don't go " on the attack" you'll lose the argument...stay calm, polite but resolute as you state your case....but I guess you know this.
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Essential to regularly retest vitamin D, folate, ferritin
Suggest you get these tested
Likely to benefit from addition of T3 prescribed alongside levothyroxine
Email Thyroid UK for list of recommended thyroid specialist endocrinologists who will prescribe T3 ...NHS and Private
Such good advice above - most GPs do not know about the damage statins can do to people with hypothyroidism nor being under medicated can raise cholesterol.
The majority of GPs don’t understand what the range is there for either - it’s a guide only! Sadly most think the range is a ‘cup’ and that the patient is a ‘ping-pong ball’ and if they get the ping-pong ball in the cup they win a prize.
They simply do not understand that you can be on completely different doses at either end of the range and be hypo (at the lower end) and be optimal and well (at the upper end) OR, heaven forbid, because of other confounding factors you may sit outside the top of the range before you feel well OR (panic stations) the range might not apply at all! 😱😂
Symptoms should be the most important diagnostic tool, but it sits at the bottom of the list as an annoyance. Nothing annoys a doctor more than having a lovely set of blood results, all ‘normal’ and the damned patient goes and spoils it all by having symptoms! 😂
Ever been told by a GP “Your symptoms should have cleared up by now” or something similar and made to feel the failure for not having responded to their rubbish treatment??
Get all your notes organised and be confident in that you have probably 10x more knowledge at your fingertips than your GP has in their brain 😊👍
Great advice -your ft3 is too low. So you are not converting well. Have you thought about increasing your b12 injections? increasing the frequence of b12 jabs helped me loads with my throid hormone uptake and conversion . Just a thought.....
An increase of levothyroxine will probably take you over the range which you dont want. SO try extra b12 jabs and if that doesnt work then yes you need a thyroid friendly specialist (pick very very carefully) and ask to be referred to see if they will add a trial of liothyronine in. Getting liothyronine on the nhs isnt easy though.....
Do you have Pernicious Anaemia? This condition should be diagnosed before supplementing with B12, and we need regular B12 injections for life as our stomach can no longer
Lots of people find 5 milligrams of folic acid causes many symptoms. That sort of dose is usually intended short term (a few months) and then reduce to a more typical level of 400 micrograms a day or something like that - keeping an eye on levels by testing. Some do need higher doses, but just ploughing on with such a high dose is not recommended.
Thank you all for your great comments. I had my phone consultation this morning. Guess what!! She didn't want to know. As far as she is concerned my levels are all within range so no help. I explained my thyroid thoughts giving her the results from my private blood test and that I didn't think I was converting. Her reply - your T3 is within range so what. I spoke about my B12 and again - your blood test is above normal so you don't need anymore. I explained all my symptoms and how long I have had them - and - Have you any new symptoms? She said I could stop the folic acid if I wanted to but she wasn't prepared to test again for another 12 months as that would be how long it would take to deplete the reserves I had built up.
@Wavylines - your suggestion of more B12 was virtually ignored. The only scrap I got from her was that the blood test taken before christmas was also being tested for "Cell tissue autoab screen test - (TP)".
Anyway I have just ordered some sublingual B12 as an alternative to try.
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Documentation/ Studies to show GP!
GP wanted to see me - results are back. Need help please.
GP wants to reduce my dose
Dr’s appointment - need advise re : T3
Thyroid function test results after levothyroxine increased to 100mcg. Will I benefit from dose decrease?
