Hi everyone
Bit of advice please.
on 200mcgs for hashimotos.
TSH<0.01 (0.27-4.20)
FT4 29.6 (12-22)
Had a private FT3 test done 5.8 (3.1-6.8)
GP wants to reduce dose but last time they did this I felt dreadful. Always have required a high dose as thyroid completely atrophied.
I am anxious but also perimenopausal.
no other symptoms of being over replaced.
Antibody levels are all ok.
Thoughts please? Gp due to phone me in 2 days.
Thanks!
ALWAYS test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you did this test
Do you always get same brand levothyroxine at each prescription
When were vitamin D, folate, ferritin and B12 levels last tested
What vitamin supplements are you taking
Yes… always do a fasting sample (with water)around 8.30am. On same brand for years. No thyroxine taken that am .
Vit D 84(on supplements)
Ferritin 45 (15-150)
Folate 5.4 (3-26.8)
B12 428 although private tests active level 48 (in grey area… had been 34) with a positive MMA but GP refusing to treat.
Just vit D supplements as waiting and hopi g that GP will treat low B12 so not supplementing at the minute
Folate 5.4 (3-26.8)
B12 428 although private tests active level 48 (in grey area… had been 34) with a positive MMA
So you need to start supplementing yourself
Thousands of members on here self supplement B12 and B complex
NHS only tests and treats vitamin deficiency. We need GOOD vitamin levels on levothyroxine for improving conversion of Ft4 (levothyroxine) to Ft3 (active hormone)
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Highly effective B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
In-depth article on different forms of B12
perniciousanemia.org/b12/fo...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
perniciousanemia.org/b12/le...
And why aiming to keep B12 over 500 recommended
perniciousanemia.org/b12/le...
Great reply by @humanbean on B12 here
healthunlocked.com/thyroidu...
Low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need 2 per day and/or may need separate methyl folate couple times a week
Post discussing different B complex
healthunlocked.com/thyroidu...
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
Have the MTHFR gene. Both parents had pernicious anaemia. Wanted to see if GP would treat me with low active and positive MmA because IF and parietal cell both negative and once I supplement, tests won’t be accurate
Ferritin 45 (15-150)
On low side
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week. Increase the amount of red meat you eat, other foods include pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Have red meat x2 week and daily pumpkin seeds. Diet would be good
Well you need to improve ferritin to at least 70
Red meat daily, liver once a week etc
Had a private FT3 test done 5.8 (3.1-6.8)
Did you have the FT4 tested at the same time as this FT3 test? What was the result? How long ago was this done?
Although you're on quite a high dose of levo, I doubt you're over-medicated unless you've recently had an increase in dose. Far more likely that you're experiencing a Hashi's 'hyper' swing, where the damaged thyroid releases its stock of thyroid hormone - T4 and/or T3 - into the blood causing levels to rise sharply. But, this is only temporary. Eventually the levels will go down again by themselves. And the trouble with allowing the doctor to reduce your dose is that he probably won't want to put it up again when necessary - as I'm pretty sure it will be.
GP wants to reduce dose but last time they did this I felt dreadful. Always have required a high dose as thyroid completely atrophied.
Was your FT4 that high last time they reduced your dose? Or was the GP just going by the TSH?
I suspect your need for a high dose is due to you being a poor converter rather than your thyroid being atrophied. Your thyroid would have stopped making hormone pretty soon after you started levo, when the TSH dropped. But if your thyroid is atrophied you have Ord's rather than Hashi's. Not that it makes any difference, but for general information. 
hi! No… gp only rests FT4 and TSH. Had a Uss years ago for a lymph gland issue and sonographer said it was completely atrophied. My TSH has been that low and FT4 usually right at top of range. Can’t remember my dose when they reduced me as it was 2 yrs +.
I had a bone scan (all ok mild osteopenia) as always tend to be in upper range of FT4 with suppressed TSH.
OK, but all that has nothing to do with the sudden steep rise in your FT4. I'm saying that it is more likely to be due to the disease than your dose of levo. If your dose hasn't changed then it can't cause a sudden rise like that.
Osteopenia has nothing to do with TSH.
Think the FT4 was right at top before.now going over. The BONE scan was to check I wasn’t developing osteoporosis as I am on such a high dose of levo
But levo doesn't cause osteoporosis. It's more likely to be caused by low T3 and low nutrient levels.
There is a huge difference between the top pf the FT4 range and the level it is now. That just cannot happen whilst staying on the same dose unless you had a 'hyper' swing.
Yes… I agree. I don’t feel over medicated. Just hoping the GP won’t insist I lower Levi dose as they like the blood tests to look in range rather than go by how I feel. V frustrating!! Appreciate the responses!
You might well need B12 injections, maybe post in PA forum on health unlocked for some support with this. Lots of people are self treating or there are private doctors you can see who will write to your GP.
I take 175 mg of levothyroxine and my blood test results are usually crazy. My TSH is practically non existent, maybe0.005, My T4 is several points above the range but, like you, my T3 is normal. I, too, tried to reduce my dose but felt very ill quite quickly. I have had a bone scan and all is normal and I have no hyper symptoms. I think doctors should take T3 measure into account which many don't. Have you shown your GP your T3 result? New doctors get panicky at my result. I have explain that the result is normal for ME.
Yes… same scenario here, GP said she doesn’t like my numbers even though I said I feel terrible when they reduce dose. I have only ever had FT4 and TSH done at GP. She hasn’t seen new T3 result as they don’t measure it and I just got it back. I’m hoping she will listen . she is asking for an endocrine opinion which is just as bad as the endocrinologist I’ve seen has been just as unhelpful. 🤞🤞🤞for tomorrow!
I was referred for an endo opinion and when I spoke to the endo, I was quite firm about how I felt. Maybe ask if you could be tested for hyper symptoms - sleeplessness, shaking, bone problems etc. (check these out yourself).....because as far as you know, you have none and feel fine on your current dose. Or ask to be tested for hyper symptoms, other than on numbers alone, on a regular basis. Perhaps ask the endo how often you should be tested for hyper symptoms
The GP had just asked for telephone advice from them so won’t know till tomorrow.
and it seems you won't have a chance to speak to him/her yourself. If the endo insists that dosage should be reduced, ask what symptoms you should be experiencing if you re over dosed and insist on having immediate tests for these so called symptoms. I know a bone scan is relevant because overdosing can encourage deterioration of bones.
And if the Endo is diabetes specialist he/she won't have a clue! Been there with GP asking an Endo asking 'do I go by numbers or how patient feels?' His answer was to go with the numbers - and I was in a terrible state,!
Had a fab endo years ago who actually wrote” go by how the patient feels even if the numbers don’t look so good” but endo’s now just too ?nervous?? I have it in writing but still have to battle
I only started to feel well when my T3 got to just over 6 and my vit D got to 150 and also by taking projestorone only as it strangely really helps my thyroid but oestrogen makes it worse. I was really ill when my T3 was 5.8.I waited on the GP to act, I wouldn't recommend waiting on the GP, I recommend taking charge, and getting your vits to optimal ( the NHS only gets us to normal) and a private appointment for your thyroid hormones and then once your thyroid is stable your GP can then prescribe what you need, best get a gp that will agree to this first though.
It's so awful when they ask us to reduce even though we tell them we'll get ill, I had this with an NHS endocrinologist. They just don't seem to understand or want to listen. Good luck
I know. My folate has been .1 over bottom of range and they said it’s fine. Optimal results just aren’t even discussed. I’ve actually gone cold turkey on HRT levels (HRT specialist Advised) have gone so high but seeing her again in 1 month with p lab to ween back on. I’ve already climbed 1 stone so messing with my thyroid now would send me over the edge🙈. I am still trying to get Vid D up more. Appreciate the advice. Perimenopause has def complicated things. Hoping I can just point blank refuse to drop dose if they insist!!
It's so hard. A lot of the private thyroid docs will do hrt as well as it's often interlinked.
Hi! I found through my own experience that the higher levels I take of T4 the worse I felt. I felt better when I had T4 with T3. Armour Thyroid provided a T4 to T3, but it was a 4:1 ratio 4 parts of T4 to one part of T3. Still didn’t quite feel well enough. There’s a company that puts out a 2:1 ratio T4 to T3 and that made a dramatic change in my personal experience.
Hopefully this will help
if you feel anxious that could be a sign you are over medicated. The high FT4 alone would indicate you are. If you’re not already supplement with Selenium.
Am I over medicated?
Am I over medicated?
Could I be over medicated?
Over or under medicated?
