Hi. Thankyou for your reply. It was hard enough getting them to do t4. I had my t3 checked with Medicheck a prior to the increase and it was 6.27 which was at top of range. The do. Said if my TSH goes down after the 25mcg increase she will have to stop it
Well, do you have thyroid antibodies because if you do then results can fluctuate as a result ofantibodies activity. So TSH might shortly normalise. If the lab doesn't do FT3, FT4 and TSH at the same time then you haven't got enough information about your thyroid status to make dose decisions. The doctor will be no wiser than you!
If FT3 is over range then you will want to reduce dose to bring it back in range. Usual increase/decrease is 25mcgs.
Why won’t they just test for them all. It’s ridiculous. I don’t like confrontation but I need to do this. It’s my health at the end of the day. Do you think my b12 was ok or a little low
That’s what I thought but lab has put normal. Do I have to go through Medicheck to get one done. Folate was low but now coming back up everything else was good with Medicheck but doc wouldn’t accept it so had to have one done with them.
I’ve seen 100 recommended for Vit D but are you also taking the co factors? When we take vitamin D then calcium also increases and not good to have too much. The co factors are K2 and magnesium. The K2 takes the excess calcium out of the blood and takes it to the teeth and bone and the magnesium locks it in there. When I did this my calcium went over range but when taking the co factors it returned to midway in testing. Otherwise we could be at risk of stones, kidney, gall, so the co factors are important.
Good that folate has increased.
As thyroid patients we can loose vital nutrients quickly so need to keep topping up.
What vitamin supplements are you currently taking?
Refuse to reduce dose based just on TSH
Ft4 is not over range
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).
Is this how you do your tests?
Refuse point blank to reduce dose just because TSH is low
I’m in the US and NO Endo will test the FT3 and I have no thyroid and take combo of t3/t4 meds.... I swear it’s because they follow the American Thyroid Association guidelines.
These Endos/GPs act like they are paying out of their own pockets for these blood test!
It is imperative that you ARE NOT dosed and monitored on a TSH level:
You have Graves :
It is known that the TSH is an unreliable measure in Graves patients, and you must have T3 and T4 measured and monitored and dosed on where your T3 and T4 sit in the range.
Your feedback loop is broken - you have ingested RAI which has burnt your thyroid out in situ : checking just a TSH works on the presumption you have not had any medical intervention and your body not disabled :
I can't add much more than I've already written to you previously, if I knew how to do it, I'd simply reprint everything but am not technical or computer literate and the thought of learning how to do it, stresses me out :
Hi pennyannie nice to hear from you. I have told the doc I have Graves last time that’s why she did t4. They just don’t get it. I gel really well on dose I am on now. Will have a battle on my hands like so many have. It’s not right. If she doesn’t agree will ask to see endo
Yes, it is low - but it's where mine needs to be for me to be well :
Once on any form of thyroid hormone replacement the TSH is not a good measure of anything AND especially true if you have Graves as that's the nature of the disease, when we went ' hyper ' our TSH went down there, and some people's stay stuck down there and or low.
I can't be well and have a TSH in the range :
I prefer to be well :
The TSH is like looking on the dashboard of a car to see if you have enough petrol.
The TSH probably works better for those without a thyroid auto immune disease and those with a thyroid, but it's a quick snapshot view.
We are missing parts of our body - we haven't got our thyroid anymore, and we have an auto immune disease, our feedback loop is broken and doesn't work so there's no point just looking at the dashboard - it is necessary to open up the bonnet and look under the hood and use a dip stick to check manually the oil and petrol.
If you get an endo appointment you'll be allowed T3 and T4 blood tests in preparation, so it seems to me, this checking and relying solely on a TSH number is a cost cutting exercise, and we have been marginalised.
Alternatively maybe we would all be better off being monitored and dose adjusted by endocrinology as it seems in primary care the options of treatment non existent and thyroid knowledge inadequate.
Thanks pennyannie. Im just paranoid about my TSH as when I was ill it was due to the Junior endo deciding my TSH was off range completely and reducing me from 250 levo to 100 straight away. My usual endo does not worry about my TSH As always your advice is in layman’s terms is invaluable. Thankyou
So that's good as you have an endo who isn't TSH obsessed - so hope you are dosed appropriately on T3 and T4 levels :
To be honest - I haven't actually read this post of yours properly -
I just rushed off the first message before I did my weekly shop:
Came back with plants I didn't really need :
Answered you quickly then and now have come back in having found space in the garden, and going to jump in the shower now :
So blinds down - I'll be in the dark now in a manner of speaking and will read the above when I'm all clean again.
Thank you for your kind words.
P.S. I 'm a bit confused reading your post as if you are under an endocrinologist why is the doctor interfering in your medication ? I find I need to supplement to maintain ferritin. folate, B12 and vitamin D at optimal levels. I also take an adrenal glandular and am now self medicating and buying my own full spectrum thyroid hormone replacement.
I became very ill some 8 years down the line from RAI treatment, and I believe this was because I was dosed and monitored on a TSH result in primary care that had to be kept in the range. If you think about it, why would you want to try to stimulate a gland that is filled with antibodies and then poisoned and burnt out and killed off with RAI ?
I am not under an endo currently. I wish I was lol. That is exactly my point why would you want to stimulate something that doesn’t work Like you say it makes no sense to me at all. I have the dreaded phone all today with GP so wish me luck
Yes, but the trouble is the NHS work to guidelines and the guidelines make no allowance for Graves post RAI or generally AI thyroid disease and are not fit for purpose despite the fact they just been updated - and it's truly alarming :
Doctors don't seem to have the knowledge or experience to " think outside the box " - and can't or will not write a prescription for anything other than Levothyroxine so probably feel impotent if they have the knowledge but aren't allowed to use it if T4 doesn't fix things for the patient :
We are a small proportion of the overall so guess we do not matter and we either stay listening to the dogma, and in my case get very unwell, or jump ship when the system fails us.
your TSH is surpressed and the GP will not like that. I suspect its your T3 level that is supressing your TSH as your FT4 is with in limits. I find out what is excatly going on I would try the Medicheck thyriod test, it cost around 40 pounds. How ever you have not mentioned your adrenal glands and your hormone levels. Good luck its har work and like you I have cramps in my legs its pitiful
Thankyou stockman. Didn’t know t3 could do that. I have never had my hormone levels checked. Have been looking on Medicheck but don’t know which one to have done.
The TSH is a pituitary hormone not a thyroid hormone and it is the T4 and T3 that counts. I wouldn't be reducing or stopping Levothyroxine if I was you. Your vitamins need to be optimal for the Levothyroxine to work so you need to test B12 (yours looks a bit low), Iron and Ferritin, Vitamin D and Folate. You are lucky that your GP tests your T4 mine will only test my TSH which in my case means nothing. Just to add my TSH is 0.38 and my T4 is 22 because I tested it myself through Medichecks. I feel well at these levels and I am taking no medication which shows how different we all are.
Hi I don’t want to stop it as I do feel a lot better than I did I had all my tests done in April how often do you need them doing se only tested t4 cos I really stressed it needed doing but wouldn’t do t3. That’s a great result for you at 22 an not on any meds. I have had RAI so defo red meds.
I do a test through Medichecks every 6 months but I had a Thyroid storm last year so I am keeping a check on myself and if I notice my blood pressure has gone up or I have symptoms I will do another blood test. My GP is useless so I don't involve him in my thyroid disease now. You can read my story on my profile page if you are interested.
Also have you looked Elaine Moore's site? She had RAI and helped me get diagnosed about 10 years ago when my GP thought it was the menopause.
Thankyou I wil read your story. I have looked at Elaine Moore’s site. It’s very interesting I never knew about thyroid storms until coming in this site. It’s fantastic the information and help you receive
Hi slowdragon. All my vit levels were good apart from folate but that’s for up now to 12.5. I have just had to ask do to put a note on system so I get same brand as they gave me a different one again and I refused it. I currently take vit d and k2 spray. Magnesium.glucosomibe. B complex. Vit c. Is there anything else I need to take. Is the low neutrophils and low b12 connected. Thanks slowdragon nice to talk again
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