I have primary hypothyroidism after RAI 35years ago.I feel good on 200mg with a surpressed TSH
Meds have been reduced again and my TSH is on the way up it’s now 81.32% through the range.
I know that for my condition my levels should be low TSH with high T4
Is there any research or papers I could give to my GP to enlighten him
So sorry you're facing the TSH issue......@tattybogle and Charlie-Farley have covered how to deal with this, and links you could use. Charlie-Farley it doesn't look as if I've managed to tag tatty.... would you step in please?
thanks
Is there a tattybogle in the house? Actually both the posts you mention are in the pinned posts section or you can trawl through our posts on our respective profiles. 😊👍
AustinHealeySprite 🤗
Thanks
Just found the pinned post thanks
hey again
Thyroid Canada have some very good articles- paper reviews. They bring together the wisdom and supply references so if your doctor wanted to go back to original sources 😂(yea).
Here are the links
Thyroid CA
Low TSH bones 2019 heart 2018
Still no proof that a low TSH causes harm to bones
thyroidpatients.ca/2019/07/...
LOW T3 effects on cardiovascular system ***personal note this often happens when doctors dose by TSH and as a result under medicate the patient because of the misconception TSH is the gold standard. Would be laughable if it were not doing so much damage to people. 😱
thyroidpatients.ca/2018/07/...
To be clear, that is Thyroid Patients Canada.
(If you search for Thyroid Canada you might see first the Thyroid Foundation of Canada - a different organisation.)
I know the links go to the right place but people often scrabble about later when they have mislaid the link and the post.
So it’s not the judean people’s front - it’s the people’s front of judea (for anyone reading reference is Monty Python Life of Brian). Obviously no explanation required for helvella 😉👍
Thank yo Sooooo much for sharing this article. I just read the entire article, very powerful article. Every thyroid patient should read it. I will be printing a copy for my endocrinologist. I will consider giving a copy to my G.P but it might be too advanced for her. I will surely read it several more times. I now feel at ease and empowered!
My tsh has been suppressed since I started taking thyroid hormone in 2017 following my thyroidectomy. Strangely enough, I was hypothyroid for several years prior to my diagnosis and my TSH never rose, that prevented me from getting a diagnosis. I was almost bed ridden and the uneducated doctor did not bother to check my thyroid hormones. I had to fight like hell and demanded to have ultrasound which led to my thyroid cancer diagnosis.
I have now been traumatized and have lost all faith in doctors. To make matters worse, the endocrinologist lowered my dose within 8 weeks after surgery because my TSH was 0.6. Still within range but low. He never bothered to test my Ft3 nor FT4. I have not regained normal health now 7 years later.
I wish I had found this wonderful site earlier. Although I’m not 100%, I’m a lot better than I was before I discovered this forum, I’m now able to function most days. I feel empowered when I go for my 6 month checkups, I’m not afraid to challenge the so called “ gods”.
Thanks to all you lovely, patient and knowledgeable people. You’re saving lives!!🙏🏻
I got sorted relatively quickly- I was lucky, but I read enough lived experience on here to know I could never just walk away. If I can help, one person at a time that is the best feeling in the world. There is power in numbers 🤗. I’m so glad you are self advocating confidently and glad to share anything I find.
Thank you C-F. As it happens, I've no idea how to find pinned Posts.....techie stuff is difficult for me 
Hi 1tuppence 🤗
If you are on a phone - go to the top and you will see posts. If you click on this it will then offer types/categories you should see pinned there then if you click on that it will take you to the pinned posts. If you are on a computer it shouldn’t be wildly different but any problems let me know and we will work it out. Perhaps we need a few crib posts just to get people going 😉👍
No, not finding anything ...or rather anything that looks as if it is what you mean. I'm on a laptop. Thank you
Bottom right corner of attached screenshot shows the Pinned posts.
Or follow this link: healthunlocked.com/thyroidu...
Thank you for your trouble helvella. Much appreciated.
Sadly, neither method works for me on my laptop.....I must be doing something incorrectly, as I can see on your screenshot....but not when I try to find on my screen, I can follow your link, and see...but not do the same without your link.
My head hurts......how is yours? Sorry.
In which case, how wide is your browser window?
If I make my browser window very narrow, the things you can see on the right in my screenshot disappear.
Or at least, they go out of view.
But if you scroll down, down, down, eventually you should be able to see that they have simply shifted position from right of window to bottom of window.
(Can't think of any other obvious suggestions. So am crossing my fingers...)
Hmmmmm the top of my HealthUnlocked page isn't the same as yours........ perhaps that's the reason? The HU format changed a little while ago..... Profile/My hub/Chat/Post/Alerts/Menu are all now top right.
It seems I need to accept I won't be able to access Pinned Posts, and will have to try not to annoy folk by not finding them.
Thank you for all of your efforts.
They are top right for me too! But I was trying to balance the area I put in the screenshot against the size of the text, etc.
Helvella in the ball again! I was shivering with all the windows open- just had our first Rayburn service. Pooo! Bit stinky.
Hi tuppence tattybogle had to get a job , so i'm not checking in on forum very often ....i'll be back in the new year x
1tuppence AustinHealeySprite Here's my post with list of references recommending GP's keep TSH below 2 in all patients : healthunlocked.com/thyroidu....
Thank you tatty....very kind of you. See you in the new year x
I’m too am hypothyroid and I’m on dessicated thyroid and have been for some time now. Just had a blood test 2 weeks ago and my Dr was happy with my TSH which was 1.15 ( the range is 0..35-5.50. They don’t test T3 or T4 . I live in Canada.
Are you symptomatic ratoncita?
Hello AustinHealySprite :
Post RAI thyroid ablation the TSH must not be used to dose or monitor the patient -
and you must be monitored and dosed on Free T3 and Free T4 readings and ranges -
your HTP axis - the Hypothalamus - Pituitary - Thyroid feedback loop - on which the TSH relies on working well - does not work well - as this feedback loop is now open ended as you have no functioning thyroid to complete this circuit loop.
Did the endo you saw previously write a letter to your doctor last time to stop this fixation with the TSH - if so - it should be on your file - if not - can he write to your doctor again and advise accordingly.
I do not have any medically reviewed research that your doctor will take notice of as s/he is working to guidelines which we know are not fit for purpose and are trying to get rewritten :
but you might like the following :-
Tired Thyroid -from Hyper to Hypo to Healing - Breaking the TSH rules :
written by Barbara S Lougheed -
For all things Graves Disease - elaine-moore.com
Professor A Toft's article - Thyroid Hormone Replacement - A Counterblast to Guidelines published in December 2017 - in the Journal of the Royal College of Physicians - Edinburgh - sums up the situation we all all find ourselves in :
I believe it is on this forum somewhere and where he clearly states how unreliable the TSH is when with Graves post RAI thyroid ablation and that the Free T3 and Free T4 need to run to assess the patient properly.
In all honesty once on any form of thyroid hormone replacement we should all be dosed and monitored on our Free T3 and Free T4 readings and I am fully aware that in primary care doctors are only able to run a TSH with an occassional T4 -
which is why I now run my own yearly private full thyroid blood tests to include the vitamins and minerals and self medicate in order to stay well.
Detail on my Profile Page :
I'm an oldnissanmicra -
I had my thyroid removed 40yrs ago -long story - goitre - GPs no clue - diagnosed Hashimotos. So, as I have no Thyroid gland would the same principle you recount here apply to me : the Hypothalamus - Pituitary - Thyroid feedback loop - on which the TSH relies on working well - does not work well - as this feedback loop is now open ended as you have no functioning thyroid to complete this circuit loop.My TSH has been surpressed for years+new medical centre (we moved house) are rabid when it comes to TSH levels. Mind you, Endos not much better!
Yes - I believe so :
Thankyou. I've thought that for a while after reading comments here. Why can't drs take that in board instead of behaving like a demented soul when reading blood tests? Mind you, I do private blood tests now+send them to a specific Dr with comments received from Thyroid UK. Thank you again.
As there is now no thyroid there to stimulate the TSH -
the thyroid stimulating hormone - becomes somewhat obsolete as you are now talking the hormones by mouth -
and why a good gut, and optimal core strength vitamins and minerals -
ferritin, folate, B12 and vitamin D have to be maintained to support your through this process of supporting your body and converting and metabolising well whatever thyroid hormone replacement you are taking that is to replace that which is lost and now totally lost with a thyroiectomy or rendered totally burnt out and non functioning by having been treated with RAI thyroid ablation.
and why it is imperative that we are dosed on our actual T3 and T4 readings and ranges - and not the guess estimate/maybe of broken feedback loop and an unreliable TSH :
So GP saying T3 is irrelevant was my red flag!!!!! Where would I be without this forum?! In a mess for sure!😍
Refuse to reduce dose
GP can not dictate
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
LEVO DOSE SHOULD NOT BE DETERMINED BY TSH
Diogenes/Toft paper:
bmcendocrdisord.biomedcentr...
healthunlocked.com/thyroidu...
The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:
Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis
February 2020 Journal of Clinical and Translational Endocrinology 19:100219
DOI: 10.1016/j.jcte.2020.100219
LicenseCC BY-NC-ND 4.0
Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich
LlINK TO PAPER:
ncbi.nlm.nih.gov/pubmed/320...
sciencedirect.com/science/a...
ALWAYS Recommended that all thyroid blood tests 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)
What vitamin supplements are you taking
Essential to maintain OPTIMAL vitamin D, folate, ferritin and B12
Testing options and includes money off codes for private testing
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
Only do private testing early Monday or Tuesday morning.
Hey there again :
If you're only issue is that your dose has been reduced and you were well and happy on the higher dose I suggest you contact the endo you went to a couple of years ago and ask that he write to your doctor and insists your dose is reinstated to 200 mcg T4 daily.
It's the least stressful and cheapest option to get your dose reinstated if your surgery refuse to discuss this dose reinstatement with you and your request denied.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
Some people can get by on T4 monotherapy - Levothyroxine.
Some people find that T4 seems to stop working as well as it once did and need to add in to their prescription a little T3 - probably at a similardose level to that that their thyroid once supported them with - say around 10 mcg - to restore T3/T4 thyroidal hormone balance to restore their health and well being.
Some can't tolerate T4 and need to take T3 only - Liothyronine.
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the thyroid and derived from pig thyroids, dried and ground down into tablets, referred to as grains.
Your primary care doctor can now only prescribe T4 - Levothyroxine and the arbitary anti depressants if you complain you do not feel well on your current dose of Levothyroxine.
For any other treatment options you need to see a NHSendo who may or may not deem your health issues require additional treatment options and in some areas of the country financial constraint rather than medical need seems to be how the NHS are functioning.
Obviously if you can afford to go private all treatment options are on offer at varying costs :
If you were well and happy on 200 mcg T4 monotherapy - this is the cheapest treatment option and the easiest fix for you is simply to get your dose reinstated.
If all options fail there is of course self medication which I feel I have been forced into as I have been refused all the above in my county and at the time too ill to travel further afield.
Self medication is not a choice to be taken lightly and needs serious consideration and knowledge and was a massive learning curve as at the time I thought I was also dealing with early onset dementia.
I'm now ' back in the room ' - for the most part - and my undiagnosed dyslexia that I have suffered with since a child is for the most part gone - as my T3 is now at a level that works for me.
Another book that is my goto fo everything :
Your Thyroid and How To Keep It Healthy - written by a doctor Barry Durrant-Peatfield :
If interested read my profile - there is no quick fix - but if your issues are solely a dose increase in T4 - go through the correct NHS route first as it's the easiest option though I appreciate can be a stressful stuation we would prefer not to have.
🥳🥳👏👏🍾🍾 A result showed GP a letter I had from Endo on 5th of August stating he was ok with surpressed THS and for my high dose of T4 ! So now I’m back up to 175mcg with a view after bloods to increase to 200mcg
Yippee I’ve gone from being worried and very anxious before GP visit to over the moon
Perhaps soon I’ll be back to “normal “ riding my bike gardening etc instead of sitting down feeling wrecked.
I would like to thank everyone for the support given
Thank you very much
Delighted for you. Merry Christmas
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