So I am trying to get my head around “why” I want to see an endo. (Most likely going to be private).
Sorry if this is long!!
Quick overview....
First diagnosised UAT Jan 2018, medicated with 50 Levo. Pernicious anemia with b12 jabs (diagnosised 8+yrs ago). Low vitamin d following July 2018 & feb 2019 bloods.
These are my results over the last year...
April 2018
FT4 14.8 (12-22)
TSH 2.67 (0.27-4.2)
Still same symptoms returned to docs after few months ...
July 2018
FT4 13.1
TSH 3.18
Vit d - 53.5
GP agreed reluctantly to increase meds to 100, some symptoms reduced for a period, dec bloods when less symptoms , after these bloods I had my contraceptive implant removed
Dec 2018
FT4 16.4
TSH 0.34
Thy p ab- 288 (0-60) - I presume hashi - started gluten feee diet
January2019 symptoms had crept up on me and we’re effecting me significantly again, back to docs
Feb2019 (most recent)
FT4 13.1
TSH 2.66
Vit d - 48 nmol/l
Serum b12 717 (180-914)
Folate 11 (3-20)
Liver function ALT 43 (<33)
Doctor dismissing that my symptoms are thyroid related I am “on adequate Levo replacement” will not increase dose believes it is “something else”. Saying that these symptoms could be CFS/ fibro, which I do not agree with and feel he is glossing over the “facts” and does not understand treating a thyroid issues. Also said taking vit d and k2supplements is “dangerous” to my health and it being a bit low doesn’t matter. And finally that my liver function tests don’t matter it can “vary”!!!!
I have no other auto immune conditions (all tested for)
Help before I pull my hair out!!!!
What I’m hoping for is to feel fit and well with energy and reduced symptoms etc.
What do I need form an endo, what am I wanting from them?! I want to choose wisely if paying privately!! (I Have TUK list already)
Thank you so much
Written by
Naturemama
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Before paying out for a private endo, there are things you can address yourself first.
Feb2019 (most recent)
FT4 13.1
TSH 2.66
Doctor dismissing that my symptoms are thyroid related I am “on adequate Levo replacement” will not increase dose believes it is “something else”.
First of all, you are not on an adequate dose of Levo and your doctor is ignorant of how to treat hypothyroidism. You need an increase in dose. When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well and there is plenty of evidence to support ths:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3. You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
Thyroxine Replacement Therapy in Primary Hypothyroidism
TSH Level .......... This Indicates
0.2 - 2.0 miu/L .......... Sufficient Replacement
> 2.0 miu/L .......... Likely under Replacement
But for a full picture of your thyroid status, TSH and FT4 are not enough. FT3 is needed to be tested also. T4 has to convert to T3, and T3 is the active hormone that every cell in our bodies need. If T3 is low, we are symptomatic. So testing FT4 and FT3 at the same time as TSH tells us how well we convert, or not.
It's very unlikely that you'll get FT3 tested with your GP, even when they request it then it's the lab that decides if it's done, and often only gets done when TSH is suppressed. So many of us here do private tests with one of our recommended labs, they can be done by fingerprick or venous blood draw (at extra cost).
You know you have Hashi's so there's no point in testing antibodies again, so you could just do a basic test that covers TSH, FT4 and FT3.
Vit d - 48 nmol/l (19.2ng/ml)
Also said taking vit d and k2supplements is “dangerous” to my health and it being a bit low doesn’t matter.
That's a load of bull and again your GP is showing his ignorance.
The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml).
Personally I prefer to take their advice over a GP who has had no training in nutrition.
For your current level, the Vit D Society recommends taking 4,900iu daily (nearest equivalent 5000iu)
As you have Hashi's then an oral spray gives best absorption, or you could go for sublingual drops.
Retest after 3 months.
When you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.
Check out the other cofactors too (some of which can be obtained from food).
It would be more dangerous to not take K2 and risk kidney stones, calcification of arteries, etc. The only reason to be wary of K2 is when you take a blood thinning medication such as warfarin.
Liver function ALT 43 (<33)
And finally that my liver function tests don’t matter it can “vary”!!!!
Again, how ignorant and negligent of your doctor. I have regular liver function tests as I take a medication that can cause liver problems. My baseline before starting was 16 (10-32). Retesting every 3 months I generally have a level of 14-16 (<33), only once has it ever reached 20. A common reason for raised ALT is fatty liver disease, you can find lots of information with a google search from many respected sources, I would research this and present the facts to your GP.
B12 and folate appear fine.
What about Ferritin? Have you had this tested, very important for this to be at a decent level for thyroid hormone to work properly.
So besides needing that increase in Levo, I would do a thyroid test that includes FT3 before considering paying to see a private endo. Put results on here for further comment.
Two suggestions for tests, both the same except for price:
Medichecks Thyroid Monitoring medichecks.com/thyroid-func... and you can use code THYROIDUK for 10% discount on any test not on special offer.
Hi, I approciate your time with this, and indeed I do know all if this info already... hence why I have given up with my GP. I am getting nowhere with him at all! Basically dismissed it’s not my thyroid but said “as we don’t agree I will talk with our local endo and refer if appropriate” I have no faith in that though!!!
Basically what you have done is indeed support my thoughts that I just need to see someone privately and get some better care?!
Basically any sort of discussion with an endo is going to be beneficial you think?! X
Basically any sort of discussion with an endo is going to be beneficial you think?!
Who knows? Some people have good experiences, some admit they've totally wasted their time and money.
You would need to find a very good endo who looks beyond the basics that most NHS endos do, and thinks outside the box.
You could send for the list of thyroid friendly endos from Dionne at ThyroidUK
tukadmin@thyroiduk.org
then ask on the forum for feedback by private message on any that you can travel to.
But it would still be best to get those tests done privately before seeing an endo privately, you will have all the information you need to hand and wont be persuaded to pay for them to arrange the tests at a more expensive cost that you can get them done yourself. And your Vit D will still need improving and a ferritin test needs to be done.
You need at least a 12mcg or 25mcg dose increase in Levothyroxine as you are currently under medicated
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levothyroxine
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
* This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
Thank you! I am looking into the most “natural” form of the vits I need to try and make sure I am not putting anything unnecessary into me! Thankfully oranges are a favourite!!
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