I haven't posted for a while, due to one thing and another, but I now have my blood results, and whilst I'm assuming that they all point towards Hashimoto's (which I heavily suspected anyway), it would be good just to have opinions and thoughts going forward, drawing from all your experience.
I have a NHS endocrinologist appointment next week (I was amazed it came through so quickly!), but I'm not overly confident, since having researched him (and the other local NHS endos in my area), they all specialise in diabetes, NOT thyroid! Still, I'm glad I've got the blood results to show the endo, regardless. Here are my results:
Inflammation
CRP HS - 1.53 mg/L (range less than 3)
Iron Status
Ferritin - 51 ug/L (range 30-264)
Vitamins
Folate Serum - 20.5 (range more than 7)
Vitamin B12 - Active - 90.5 pmol/L (range more than 37.5)
So, is there any advice, anything I should be specifically pointing out to the endo next week, anything I should/shouldn't be doing? In your opinions, does it point to Hashimoto's? And if so, what is the treatment, is it Levothyroxine? Do I need to push for this at my appointment, because my GP dismissed it when I mentioned that, telling me my TSH result did not warrant it. Or is it a case of just struggling along with symptoms? Will it do me harm if I do not take any medication at this point in time, do my results even warrant any medication?
Any help/advice/recommendations would be greatly received and appreciated.
Thanks all
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TrainWreck59
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Hi, thank you. I haven't been taking any vitamins, but will rectify vitamin D now. I will look into getting coeliac blood test organised. Do I need to take iron tablets?
At moment suggest you just look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
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.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 3-4 days before testing
I'm vegan, so no dairy/egg etc. GP did iron deficient test a few months back, I think, but it came back normal. Do you think I need to get another done?
Click on "Read the list of available tests" and on page 3 of the pdf you'll see
Urine Iodine Test:
Specimen requirements: Urine
Cost: £76
Order Code: END25
Turnaround time: 5 - 10 days
Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health.
Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.
Only began taking supplements today, after my whole life not taking any! Endo wants to take some bloods before the appt., as I found out this morning, so I'll wait and see what bloods he takes first, I think, otherwise I may duplicate some. Will pause vitamins again until after next week (vitamin D, selenium, b complex).
Hi, you apparently have Hashimoto’s so it would be wise to try and resolve that along with starting T4. Fixing hashi’s is not easy, and may not be possible, but getting your TPO antibodies back in range can actually help improve your thyroid function I have found while helping a friend address her hashi’s.
Everywhere I researched suggested ferritin needed to be over 70 before any form of thyroid hormone replacement worked well, and was able to be fully utilised and converted in the body into the active T3 thyroid hormone.
I now aim to maintain my core strength vitamins and minerals at ferritin around 100 - folate around 20 - active B12 125 ( serum B12 500++ ) and vitamin D at around 125.
With a T4 under the range and with over range antibodies indicative of Hashimoto's one would hope you will be started immediately on T4 - Levothyroxine - thyroid hormone replacement.
Hashimoto's is an Auto Immune disease that over time systematically attacks and destroys the thyroids capacity to produce enough thyroid hormones on a daily basis to allow you to function well and the insidious symptoms of hypothyroidism start encroaching on your physical, mental, psychological, emotional and spiritual well being, with your metabolism slowed, possible stomach and weight issues and a lower than ' normal ' temperature for you.
However it is not a straight line and with Hashimoto's you are liable to erratic own thyroid hormone production when these AI attacks occur and can experience ' swings ' in symptoms and blood test results ' appearing ' as over active - but inevitably the swing always swings back and when it does you thyroid will likely be further compromised and your dose of thyroid hormone replacement likely need increasing.
Do you currently have any issues with your eyes, sore, gritty, light sensitive, streaming - to ease any discomfort please ensure all drops, lotions, potions are Preservative Free - even those prescribed.
You might like read around and many forum members find the research and suggestions of Dr Izabella Wentz who writes as thyroidpharmacist.com of value:
Also you can find all things ' thyroid ' and so much more on the Thyroid UK website
Hi pennyannie, thank you, that's interesting reading - particularly given the extremities being so cold, no matter how warm the environment. In fact, most things you mentioned correlate with my own experience thus far, except perhaps the eyes. Whilst I am sensitive to light, and my eyes do get sore/gritty from time to time, I can't say (thankfully at the moment, at any rate) that they cause me too much bother on a daily basis. I'm sure I have that one to look forward to! What is the relevance of preservative free please, for eye drops etc?
I am very symptomatic in many other areas though, and feel desperately ill, as I'm sure so many others have done here.
May I please ask, is it the endo's job to now look at me holistically, and prescribe me Levo, or would that be the GP - because when I enquired, the GP categorically told me that with a TSH below 10, there's no way I'd be prescribed it??! 🙁
I've been dipping in and out of Isabella Wentz's research, which I'll continue.
Your doctor is paid to follow the guidelines and currently a TSH over 10 on 2 separate blood tests months apart - wins you a raffle ticket and a prescription for T4 - Levothyroxine - thyroid hormone replacement.
The guidelines also suggest that if antibodies are positive and over range treatment can start once the TSH tips over 5 ( I think ) :
Why 5 or 10 - when we know hypothyroidism starts kicking in when the TSH tips over 2 and treatment used to be automatically started by doctors when the TSH tipped over 3 -
Probably because hypothyroidism is considered a long term chronic illness and qualifies - in the NHS rules currently - for Free Prescriptions on all your NHS medications.
So - moving on - you will likely be managed in primary care once settled on a dose of T4 that tends to alleviate symptoms being tolerated and treatment will then passed to your primary care surgery. -
Treatment in the NHS is a numbers game - it is certainly not holistic :
if in ' the NHS range ' for thyroid and vitamins and minerals -
it is presumed ' you are good to go ' as the NHS only look to treat when outside these ranges -
and if you continue to complain about symptoms ' it must be something else ' and likely get suggested that an anti depressant ' might be worth trying ' as some form of consolation prize.
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 -
with T3 being the ' active ' hormone and said to be around 4 times more powerful than T4.
Your primary care doctor can only prescribe T4 which is a pro-hormone and needs to be converted in your body into T3 the active hormone that runs the body -
At the turn of the century your doctor had all 3 main treatment options in his box of tricks to help you deal with the consequences of having this AI disease which will slowly render your thyroid disabled and was able to freely treet you with T3, T4 or Natural Desiccated Thyroid which is the original successfully used treatment for hypothyroidism for over 100 years - but now the most expensive treatment option and so black listed on the NHS.
T3 - Liothyronine needs now to be instigated by an endocrinologist and in some areas of the country it has become something of a post code lottery with ICB / CCG area management restricting prescriptions and some endos working to hospital financial constraint rather than to a patients medical need.
Keep us in the ' loop ' - some find very knowledgeable doctors and specialists -
Be positive and go to the appointment just knowing a little bit more and believing in the system - you may not be disappointed - it's another lottery !!
Well, I've just had word from my endo's secretary who wants me to come in and repeat the bloods prior to my appointment next week, even though I've just received my results back from Medichecks yesterday . I sent across my Medichecks results to the secretary, but the endo still wants me to go in again and have more bloods
You’ve been given advise on what you need, what you need to keep saying during the appointment with the Endo is “why is my T4 significantly below range, shouldn’t it be in range?”
With your TSH being in range, though higher than optimal, you’re likely going to have to battle for treatment. But keep turning it back to the below range T4, this is the actual number they should be looking at.
Other guns to bring out, “if my TSH is ‘normal’ but my T4 is under range, should we be looking at the rest of my pituitary hormones to see if that’s working properly?”
Good luck and don’t forget to let us know how you get on.
Oh gosh, it's so depressing isn't it, but I am aware that I have a fight on my hands. Very useful things to say to the endo, thank you. However, I've a feeling I'll end up seeking a private endo, as I want one that understands the workings of the thyroid, not just diabetes. I wanted to give the NHS endo the benefit of the doubt though, just in case, so will definitely report back after my appointment. Thanks for the tips 😁
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