Not posted in a long time, you know how it is, life gets in the way. Been slowly but steadily going downhill for over a year, but keep getting fobbed off by gp as my results come back " in range". I'm not helped by fact that they only check Tsh. Sadly he's right to a degree. My Tsh is at 2.1 but i feel worse now than when it was at 79. Doc tested for b12, that came back at 726ng (190 - 910 ) so he says i'm fine. My vit D was 90 last summer so he wont test again.
In my small lucid moments, i read things & think " oh ! I should maybe try that" , then immediately cant remember what i was thinking of doing. This "fog" is the devil incarnate !
Docs words today are, "do you think you maybe might have fibromyalgia or essential / intentional tremor ? " "Go check it out and see if it's you ! "
Geez he wants me to do his job !
Sorry for grizzling guys, just needed to get it off my chest, though any help would be much appreciated. I need a logistical plan A that works enough to make me smile again. The tears have given me blepharitis apparently 😂 !
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ferretmam
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Your TSH may be in-range - hate that meaningless phrase! - but it's too high. When on thyroid hormone replacement, it should be 1 or under, wherever you need it to get the Frees high enough to make you well. Of course, just testing the TSH is totally inadequate, but for the moment, with that TSH, it's enough to know you're under-medicated. So, plan A should be getting an increase in dose.
Thank you greygoose, i thought that is what i might be feeling.
I have muddled notes everywhere that make for shocking reading & a gp who couldn't give a flying fig
i've tried to compare all my symptoms against other auto immune illness and it's frightening how they all overlap. If there was / is something else happening, it's gonna be dismissed
There aren't many GPs that do care about hypo. They don't really believe it's that much of a problem. This is not the right time to be worrying about 'what if there's something else' - although so many people do, probably because of their doctor's laid-back attitude to thyroid - get your thyroid sorted first. Get an increase in dose, get retested in six weeks, see what the results are and how you feel.
Looking at previous posts your FT3 was on low side
are you absolutely strictly gluten free?
Do you always get same brand of Levothyroxine?
Many people find different brands are not interchangeable
Time to get TSH, FT3 and FT4 tested
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
Yep i've been very strict about gluten free diet ((even though it's made me sad sometimes, (birthdays,holidays,special occasions etc ) )
Is the Rt3 necessary ? I live in the countryside and would have go travel miles for a blood draw ( though i will if its really needed ) ?
No B vit supplements. 2 years ago medichecks said my B12 was high - but i wasn't supplementing them then. Mentioned it to gp who then dismissed my results as irrelevent. He didn't believe the antibodies were a problem or anything to do with Hashimoto disease.
He did though send me for a thyroid scan which he said came back normal. I distinctly heard the radiographer say my thyroid was small. I thought that would indicated shrunken because of disease ? My gp thought not.
My chemist always gives me actavis levothyroxine. Sadly a couple of days ago i read people were having problems with that. Gp won't swap my brand, he thinks its just me.
I don't take them until after blood is drawn. (Breakfast is always an hour after taking too )
I wondered about the DI01 DI02 gene test - could you give me your thoughts on this please ?
I don't think my gp will let me have T3 , he's adament that T4 is the way to go.
I can't sack him either, i live too far away from the next nearest surgery.
Ord's Thyroiditis is shrunken and shrivelled variation on Hashimoto's. Technically Hashimoto's is autoimmune with goitre. But rest of world calls both variations Hashimoto's
Ferretmam, many of these tests can be done with a finger prick, so no need to travel in to get blood drawn. Read the listing on the website carefully, as they tell you whether venous/vacutainer is needed, which means a phlebotomist needs to take the blood, or a microtainer you can do at home.
Altho I agree with others, this TSH indicates you are undermedicated, so in the first instance what you need to do is simple. Get an increase of 25mcg of Levo. You may need a few increases in a row to get freeT4 high enough. Best practice is to hold for 6 weeks, have a blood test, and then adjust by 25mcg then hold 6 weeks and so on.
Although this is 'simple', you may struggle to get a doctor to agree to do it. The ideal time to get a mailorder finger prick test is 6 weeks after you have your increase, and use that as your first monitoring test.
Sadly my gp won't agree to up my Levo. He insists my level is in range & therefore i'm fine. He's totally dismissing my myriad of symptoms as unresolved issues & would rather put me onto anti depressants and into counselling ( both of which i definitely don't need, been there & worn that tshirt out! - it's my thyroid that causes the sadness but he doesn't get that! ). The other practitioner at the surgery is worse than my current one, schooled from the same hymn book it seems.
I think i need to go armed with free T results, the ones they won't do & paperwork that states where in range i should be. I know its initially gonna cost, but i also know it may / may not get one of them to listen.
I see a long journey ahead, they'd rather keep people ill and on unnecessary medication, rather than see them well and happy.
Sadly there is only the one practice near me that agreed i was in travelling distance if their gp had to do a home visit. Both their main men are also ruled by management elsewhere as it's 3 surgerys ruled by 1.
I've seriously considered going rogue & purchasing my own meds, i've ordered my own tests as i'm fed up of the Tsh rule. My other option is to pull out my savings & try to get a good endo ( gp doesnt want to refer me as he thinks i'm in range & therefore fine ! )
An old friend once told me they were purchasing from abroad, but at the time i was scared of things going wrong & ending up in a worse state. I had no idea back then my own doc would let me slide down a more slippery slope.
Time to make my own decisions about my future i think & find out where i can safely buy from x
Unfortunately private Endos can often be just as bad as NHS. You need long pockets, and to go into it prepared to see a few different ones to find a good one.
Many of us here self medicate, and you'll see a lot of good advice on how to dose.
Thanks for that tip, had a feeling it wouldn't be cheap as chips. I've put out a request on here in the hope i can find a good review about one near me, but so far no luck.
Gonna get bloods checked with medichecks so i have a new baseline to work from. 2.5 yrs ago i had antibodies at 69. Gp wasn't happy with me & said they were unnecessary, & i forgot his little quip about "he'd sort coeliac later if it needed doing" grrrrr
I'm really suffering now, so will really have to go rogue & sort myself out x
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