No clue about these? Any advice?
Blood results (I finally got them off reception... - Thyroid UK
Blood results (I finally got them off receptionist!)
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Nicola38
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Your TSH is much too high at 6.86 - should be 1 or under. And your FT4 is much too low at 12.9 (11 - 26). You desperately need an increase in dose. I believe you say in one of your past posts that your doctor has recently decreased your dose? When did he do that? And why? You are very hypo and you have Hashi's.
Hi greygoose, my dose was reduced from 150 down to 100 about 3 weeks back, I did stop taking Levo for about a week as I was getting really bad sweats and night sweats. Felt like I couldn’t cope no more, GP has referred me to endo and for a scan, it has taken a year now for my TSH to go down from 20 to this level
Well, for a start, that was too much of a drop. Levo should only be decreased by 25 mcg every six weeks.
Secondly, not much point in testing only three weeks after a decrease because it takes six weeks for the decrease take full effect.
Thirdly, your symptoms were more likely to be due to hypo, rather than over-medication is your TSH was even higher than on this test. So reducing your dose was rather a silly thing to do. Although when you have Hashi's, you can have hypo and hyper-like symptoms at the same time.
Or, it could be that you were reacting to the fillers in the levo tablet. Have you recently had a change of brand?
The last tests I had were back in August I think ? I’ve lost track I’ve had a few done lately, retest end of Oct see below 🙂
Oh! So your doctor reduced your dose despite your terrible labs? H wants shooting!
There’s a few of them lol wouldn’t know which one to aim for first 🤔
As long as you get them all, it doesn't matter which one goes first.
Seriously, though, do you realise what this idiot is doing to your health?
I am not very clued up? I’m finding anything which involves my attention span or concentration levels very difficult atm 🙈 am experiencing more mental than physical symptoms? 😳
That's because you're very hypo. And your doctor is not just keeping you hypo, he's making you more hypo.
Hypo symptoms include a lot of mental problems, like depression, confusion, bi-polar, anxiety, dyslexia, paranoia, etc. etc. etc. It can even cause poor spelling!
My spelling sucks 😂 defo very hypo then lol ! But seriously yes I have been a right b**** never used to be like this 🙈🙈🙈 I think I stick to 100 then bloods end of Oct? Can u tell I am confused already 🙈
You'll probably be even more hypo by the end of October, because as I said, the full effect of the dose reduction haven't yet make themselves felt after only three weeks. If it were me, I'd increase my dose myself and then wait six weeks to test.
SlowDragonAdministrator
Your TPO antibodies are extremely high confirming you have Hashimoto's
TSH 6.86 (0.27- 4.20) so this is above range
FT4 12.9 (11- 25) This is right at bottom of range. It should be near top of range when adequately treated
There's no FT3
When was this test done?
How much Levothyroxine were you taking
Have you had dose increase since then?
On Levothyroxine TSH should be around or just under one. So if this is recent test you need 25mcg dose increase in Levothyroxine
Bloods retested in 6-8 weeks.
B12 at 368 ( 180-900) This is on low side, but probably not low enough for GP to treat
Do you have any symptoms of low B12 ?
b12deficiency.info/signs-an...
Folate 3.5 (more than 3.5 ) so this is also very low
Folate and B12 work together
So you may benefit from a good quality daily vitamin B complex, one with folate in not folic acid eg Igennus Super B or Jarrow B-right
If you also have low B12 symptoms you need GP to test for Pernicious Anaemia before starting any B vitamins
Once you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
There's no vitamin D or ferritin tests
Ask GP to test vitamin D as kow vitamin D is very common with autoimmune thyroid disease (Hashimoto's )
Also ask for coeliac blood test
Hi I am on 100 Levo now, these tests are from August, was on 125 when they were taken, I do have b12 symptoms I get a lot of numbness and having lots of dizzy spells lately and I tend to lose my balance a lot! I will ask doc to test Vit D and ferritin, I was tested for coeliac disease last yr but was normal apparently ! So I guess I have a lot of reading up to do on hashis? 🙈 I am having more tests end of Oct I may be cheeky and just write Vit D and ferritin on the bottom lol
So these results from on 125mcg show you were UNDER MEDICATED, but now you are on even smaller dose!
No wonder you feel absolutely dreadful.
See GP and politely point out your B12 is below 500 and folate low. Tick off all low B12 symptoms
You may get nowhere, and then just supplementing daily B complex plus a sublingual B12 as well. Initially 2 or 3 per day 1000mcg. You should find you can reduce dose slowly
But continuing with vitamin B complex
Only ever do any thyroid blood test after 6-8 weeks on CONSTANT dose
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Vast majority of us with Hashimoto's are not coeliac but are gluten intolerant
Don't expect GP to be aware .....or even remotely interested
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies. Trying it for 3-6 months, if it helps stick on it
amymyersmd.com/2017/02/3-im...
chriskresser.com/the-gluten...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
thyroidpharmacist.com/artic...
Getting vitamins optimal with long term regular supplementing and Levothyroxine dose high enough to bring TSH down to around one and FT4 towards top of range.
Gluten free can help improve conversion of FT4 to FT3
FT3 should rise. But with Hashimoto's we often struggle to get FT3 high enough.
So important to retest once vitamin levels and Levothyroxine are improved including FT3 (likely privately testing as NHS refuses)
I think I read on one of your posts about large blood cells u need b12 and folate testing Nicola . I also have hashimotos and pernicious anaemia . The symptoms of both can overlap and it’s hard to tell what symptom is from what x
Thanks, it’s a bit mad cos the symptoms I am experiencing are mostly mental 🙈
Hi Nicola, hope you find some relief soon! Psych signs are often the first with b12 deficiency high MCV is often later stage. Add exhaustion, headaches, tinnitus, aching bones. You're clearly undermedicated on the thyroid side, but the b12 is an important piece of the puzzle. I'm in a similar situation actually. (see long thread on my profile from a couple of weeks ago.) My GP wouldn't run an MMA test which would have confirmed (or not) deficiency at a cellular level, and without my total b12 dropping below 150, (its 243) he wouldn't consider prescribing injections. However, I can self-administer b12 and it's safe, so I decided to ramp up the b12 and see what happened. Guess what? I feel nearly me again. It took 2 days to kick in, and the difference was unbelievable. I still have residual symptoms of being undermedicated for Hashi's and this is a work in progress. I have at least got rid of one set of symptoms so I can concentrate on the Hashi's. Because I can't be sure if my ability to absorb b12 will return once I get the thyroid meds right or if it's PA, I plan to continue supplementing with B12 (and the other b vits) until thyroid is under control. I will then have to watch out for the b12 symptoms coming back and monitor for b12 levels dropping. I suppose I won't know if this is a good plan for a while yet, but I'm hopeful! Good luck x
Hi laundretta, glad to know I’m not the only one whose docs are a bit clueless 😳 I am glad your feeling better off the b12 at least, I am also experiencing stomach problems! Digestion like heartburn or indigestion or generally just an upset tummy a lot, these do wake me up in middle of the night also ! Let us know how your plan goes hun, good luck x
shawsAdministrator
greygoose is correct about your very high TSH. The problem, I believe is that some doctors seem to think (as the UK number for diagnosis is 10), that a TSH anywhere in the range is fine. Yours is nearly 7.
The aim, once diagnosed, is to get the TSH to 1 or lower and FT4 and FT3 towards the upper part of the range. If hypo we feel awful if TSH is as high as yours. In other countries people are diagnosed if TSH is above 3.
Ask GP to increase your dose by 25mcg and mention the aim is a TSH of 1 or lower once diagnosed and prescribed levothyroxine. Read the following particular the middle part where an expert on all hormones gives his view of the TSH.
Thanks shaws, Levo dose recently been reduced to 100 do u think I should go back on the 150 then? It’s just the side effects well I think it’s was the Levo were just killing me, I’m such a wimp I couldn’t deal with them lol
Dose of Levothyroxine should only ever be reduced or increased by 25mcg maximum
Do you have results from when on 150mcg ?
Likely you didn't even need to reduce
I don’t have result from 150 unfortunately 😏 these are from 125 dose
Also not the first time my dose has had a 50mg difference, was put from 25 upto 75 Levo 6 wks after being diagnosed! I was like the Duracell bunny lol
• in reply toNicola38
"was put from 25 upto 75 Levo 6 wks after being diagnosed!"
Crazy! I've only EVER written a complaint about a doctor once, and only at the urging of a friend who was a nurse and was horrified at the doctor's boorish and possibly dangerous behaviour, but I think you should.
Ask at the surgery for results of your previous blood test(s), (which should be on file and you have a legal right to them). If they show that your levo should never have been reduced anyway, let alone by so much, you have more evidence and grounds for complaint.
Get all the facts and evidence you can (maybe someone can help you with this and with the letter as you have a hard time concentrating). Be polite and calmly state the problem, list your symptoms since the reduction in dose, and explain how dangerous such a decrease is, and that this is not the first time it's been done to you.
Write to the Practice Manager - by name if possible (the surgery will tell you if you don't know) - not the doctor.
You could also point out that this mistreatment could be dangerous to others as well as yourself.
Nicola38• in reply to
Thanks jnetti, yes the test results at top of this page are my most recent. I will have to look into it, just dunno if I have the brainpower to do it atm 🙈
Nicola, won’t repeat the thyroid stuff - great advice above. But also - you’ve got signs of macrocytic anemia there - your red blood cells are very big (that’s what the high MCV is about - mean cell volume). Which is often B12 and/or folate deficiency and you are low in both, especially folate. Your doctor should be testing for pernicious anaemia or for another cause of low B12/folate, for example, Coeliac (so I’ll second SlowDragon - don’t start taking any supplements before he does).
Both folate and B12 deficiency can leave you feeling lousy and in fact there are a lot of crossover symptoms with hypothyroidism, so no wonder you’re feeling low.
Hi jazz, when I asked doc why blood cells were large she said it was down to the thyroid, she told me I had no sign of anaemia ?? I had to take folate supplements last year but my doc told me a month is all I needed? Is all very contradicting isn’t it what they tell you ?
Truth is, they don’t get a lot of training on this stuff. They think nutritional deficiency, easy to fix - instead of, “hang on, why is this person low in B12/folate?”
But that’s why we’re here. 
Not true about our blood cells enlarging due to hypo. Jazzw is right. It is vital you get tested for pernicious anaemia. This may frighten you but it can happen and my mother died due to deficiency of B12.
washingtonpost.com/archive/...
I’m so sorry to hear about your mum 😔
Is it a separate test like just for PA? I can also be kinda heavy drinking(stems from being down so long) could this have affect on enlarged red cells?x
Possibly. But just because that might be a reason, doesn’t mean the doctor should assume (that’s if she knows it can be a cause of high MCV - bet she doesn’t, LOL).
Either way, you’re low in both B12 and folate so it’s very likely you’re experiencing symptoms because of being low in both, regardless of cause.
Thanks jazz, yes she knows lol 🙈 she told me take the 100 and retest in 6 weeks for AI thyroiditis and also testing me for CRP ? Answers on a postcard lol im useless 😳
Of course you’re not useless. CRP is C-Reactive Protein (yeah, that’s even clearer, right? 😂) - anyway, the levels are raised when you have inflammation somewhere in your body. Doesn’t really tell you a lot other than that - not very precise, LOL.
It’s good she’s testing for thyroid antibodies.
Oh wait - Nicola38 - why test again for AI thyroiditis? According to the results, you’re positive. It’s not like there’s going to be a different result.
Hmm. She definitely doesn’t understand thyroid disorders if she thinks there will be!
I'm not medically qualified but it is through the enlarged cells that detect Pernicious Anaemia which isn't the same as a B12 deficiency. With a deficiency - taking sublingual B12 tablets will probably increase it. With PA we need 3 monthly injections for life as it is also another Autoimmune Disease. Many people feel they need more than a three monthly injection so may supplement themselves. When we get one autoimmune condition we can develop others. I have three at present.
It is just a blood test to diagnose.
And case in point - you don’t get large blood cells as a direct result of low thyroid! That’s rubbish!
Oh, and pernicious anaemia is different to iron deficiency anaemia. So she might have been referring to the iron kind.
Thanks so the PA is something to look into then?
Have noticed tho since dose was decreased I am not sweating no more no night sweats either ? I’ve gone back to being a freezer lol x
Not surprised! Mind you, it really is cold for September.
Dose often needs very fine tuning
If 150mcg really was too much, then reducing to just 125mcg/150mcg alternate days....or even just reducing dose 125mcg twice a week
Going from 150mcg to 100mcg ...surprised your not completely bed- bound
But low vitamins must be optimal for thyroid hormones to be able to work
Bed bound? I wish!! Tee her!I don’t really stop! From about 7 am still managing school run and work 😬 gotta be done !! Straight from work to another school run then another shift at home !! I do get very exhausted so I tend not to let myself sit down too much 🙈 because when I do I fade fast lol 😴
Am hoping the endo May be more helpful or will he need shooting too lol
What got me tho is the doc wasn’t at all bothered about antibodies being slightly high, at this point I was not aware of hashis etc.. I asked him what the Antibody thing meant and his response was it’s nothing to worry about although it may cause you problems when your older? Hmm 🤔
They don't learn anything about antibodies because they don't understand it and there's no quick fix with a medication.
But you can get well.
Getting vitamins optimal and dose of Levothyroxine down to one (or less) and very often we find strictly gluten free diet helps, sometimes significantly
Low vitamin B12 can cause night sweat, dizzy, pins and needles etc
Did you see my post above, about writing a letter of complaint? I really think you NEED to, for your sake and for other patients'.
Hope you remember which of the six (or so?) doctors did that! I don't know how many doctors are at my practice and had to ask at reception to find out who was my official GP. Not sure if I've ever met or spoken to him (perhaps over the phone once) lol.
Thankfully he isn't the one I had to complain about.
Nicola38• in reply to
Yes I seen it, thanks, I know all the docs I’ve seen, the one helpful one was actually a locum and he actually physically examined my thyroid and said it was enlarged, no referral for a scan tho 🤔 didn’t know if that was standard procedure or not tho
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