I have posted a ton of thoughts and ideas over the past couple of years here on things I have been trying to improve my health living with hypo - some seem to have been helpful and some have probably been ideas that have not lasted the test of time.
I have now managed to link up with a professionally trained nutrition coach with a degree and masters in sports science and nutrition to rely more on professional help rather than second guessing from what I read on the web.
I had my first session yesterday and it was quite eye opening.
Some important points that may be taken as sacrosant on the web sites is totally at odds with what the professsionally trained world believes.
Hey ho as they say - and I will now have to work with him and try to find some mutual accomodation as it is hard to drop certain things that you think may be important.
Over the next week ot two as i develop a formal nutrition plan I will post it here in more detail. The proof of the pudding is then in the eating....
And i took this route as I have so far not made anything like sufficient headway this year with weight loss, despite trainnig hard, having supplements and sufficient levo dosing.
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Danielj1
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April 2023 for full test paid by me - NHS test Feb 2023 which only tests TSH
TSH was just over 2 for NHS so as under 5 they mark in my practice as OK and leave it there -
So in reality the further thyroid specific tests I paid for on your list will have no impact on Levo dosing really given this timing in NHS terms but were added to a test with the D/B12 etc so paid for them anyway
It is great you have a nutritionist coach and it will be interesting to hear the details of your nutrition plan.
However, if you have a TSH of over 2, a lack of weight loss is more likely due to remaining under medicated on thyroid meds than a lack of nutrients given you've been considering them for several years now.
And i took this route as I have so far not made anything like sufficient headway this year with weight loss, despite trainnig hard, having supplements and sufficient levo dosing.
How much levo are you taking?
How do you know that this levo dose is sufficient? TSH won't answer that.
FT3 followed by FT4 are the most important labs
T3 is the active thyroid hormone essential to every cell in the body and must be available in a constant and adequate supply
I suspect your FT3 is low, the result of poor T4 to T3 conversion.
Appropriate supplements eg vit D and vit B12 will support thyroid function but will not help replace deficient hormones caused by a failing thyroid
Training hard when hypothyroid ...
Engaging in too much exercise can negatively affect your health and put too much stress on your thyroid.
A good diet is clearly important but if your weight gain is thyroid related then diet alone will not overcome the problem. It needs to be corrected at a cellular level.
Your metabolism needs to be reset...
The main job of the thyroid is to control your metabolism. Metabolism is the process that your body uses to transform food to energy your body uses to function. The thyroid creates the hormones T4 and T3 to control your metabolism. These hormones work throughout the body to tell the body's cells how much energy to use.
Your thyroid medication needs to be correct for your body's needs....I'm not convinced it is.
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
The easiest way to deal with a GP who won't increase prescription when TSH is over 2 is to Do it first and Ask permission later.
Collect enough spare levo that you can increase your dose by 12.5mcg / day
Do that for 6/8 weeks .
then , if if feels like an improvement inform GP you tried increasing dose slightly and feel better for it ,and would they please do you a blood test to see it it is safe for you to continue .
As long as TSH /fT4 comes back as still within ref range, they will have no excuse to ask you to reduce again,, and will usually agree to write new prescription for the higher dose .
Edit : Danielj1 i didn't realise your fT4 was often high / over range when i wrote this reply... in which case increasing levo is not the best idea .
in cases where a higher dose of levo is not appropriate / TSH still too high / still not feeling well, then the obvious next step is to push GP to refer to NHS endo with a view to a trial of T3 .
A trial of T3 might be allowed in your area , or it might not, is still a postcode lottery , some areas have restrictions on any 'new' patients , or are putting other barriers in the way .
But many NHS areas will offer T3 trials if you push hard enough to get referred (and you do your homework and got referred to an endo known to prescribe T3)
You have good grounds to ask to for a trial of T3 according to the Liothyronnine guideline that all NHS areas refer to ,because your TSH is higher than optimal and they can't increase Levo any further . sps.nhs.uk/wp-content/uploa... page 13 " Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)"
look up the prescribing formulary for your area to see if it allows T3 trails for 'new' patients (not already prescribed T3).. in areas that don't , there is no point pushing for NHS endo referral ...... but in areas that do allow new patients , it's worth a go .
Unfortunately if you live in an area that doesn't currently allow any 'new' T3 trials , then private endo /prescription is another option.
I have done these tests for over 5 years and they have pretty much given the same results every time so I have stopped stressing over them
FT4 above top end of range T3 typically around middle or just above and TSH from 2-3 - I have never had it lower
I have learnt to live with this and accept the GP view that I am at my max dose of Levo in his view
I stopped doing the tests for a couple of years as I stopped seeing the point given the above - b12 was low and I am now taking daily supplements
d3 result did not appear on the test so I need to repeat the test and make sure I get a value for D levels - D and b12 were the main reason for doing the test rather than TSH as this has just been done by GP
I fully accept the standards outlined in the responses above about best practice protocols and the need for lower TSH but am not planning to “fight the system” at all any more and will focus on diet /cold water and anything else out there I can find to help
I do appreciate the support and input but we are where we are as they say…
FT4 above top end of range T3 typically around middle or just above and TSH from 2-3 - I have never had it lower
Your T4 to T3 conversion appears to be poor....high FT4 compared with considerably lower FT3
TSH is not a reliable marker.....scientifically proven.
Did you read the links I aded in my reply above?
You may benefit from the addition of a little T3
This may "kick start" your metabolism and enable you to lose that persistent weight
Or, you may have a form of thyroid hormone resistance where not enough T3 is reaching the nuclei of the cells and the T3 receptors...and needs some exogenous T3 to boost entry!
Or, you may have a combination of both.....which I have.
Optimising vit D3 may help.
Either way it sounds as if your cellular T3 may be low
Low cellular T3 = health problems
I have learnt to live with this and accept the GP view that I am at my max dose of Levo in his view
I'm afraid his view is based on very poor knowledge rather than scientific fact....
Have you asked to be referred to an endocrinologist?
It's a case of fighting to improve your health....despite the system. Not being beaten by the system
Have read all the articles above which are important I agree.
One article states explicitly no new access for T3 for new patients unless in exceptional circumstances is how I read it. In our practice if you are under TSH 5 then that is seen as fine and OK for general health purposes. There must be a load of others in the same boat as me I suspect.
Short term priority is to redo the test for D vits and keep on with B12 supplements.
The one line summary from all the evidence above is that the system is broken for TSH monitoring - but there is zero chance at the moment of change I suspect.
I would love to think the patient can fight back, but I am not seen as ill in the eyes of the NHS definitions....
Yes, sadly many are in that same boat, and sadly many may die as a result, never knowing why they became so unwell. The medical profession in general lack the knowledge to treat anything beyond uncomplicated hypothyroidism....and many struggle with that!
As a result many of us have had to learn how to treat ourselves....it is a monumental scandal. I spent decades trying to discover why my health was slowly deteriorating, with both NHS and private treatments.
Nothing improved until I arrived here and found a small group who had travelled the same road that I was struggling along. They talked from experience and they offered guidance as I did my own research and eventually found the answers. I worked through some troubled times with family illnesses and bereavement so I understand the challenge. It wasn't a quick fix....but the fix was there to find. I owe them a great deal!
Here, we can only share our experiences but that sharing has helped many who arrived feeling they had reached the end of the road.
I hope you find your way forward soon, we'll be interesting to hear of your experience.
Understand your frustration. I deal with a professionally trained nutritionist and sports coach/therapist. I have done for years, long before I knew my issues were due to hypothyroidism. It’s now almost all to do with my muscle issues. I normally do very well but really struggling at the moment , despite his best efforts. However I do sometimes wonder a little about their depth of understanding of our disease. Commonly available information does not cover the half of it. When doctors do not have any understanding of the suffering etc of living with hypothyroidism, I genuinely wonder about the knowledge and experience of said therapists, especially as they deal with a particular demographic which is, dare I say ‘healthier’ than us. I will be very interested to read your feedback about your experience on the forum.
thanks tistapple - the outcomes have to be seen in the light of any other stuff I am doing eg first 1 minute freezing shower today and will do this daily from now on….it was immediately obvious from our first chat that my accepted tolerances for carbs and potential insulin spikes were set far more generously than he is going to allow me - so this may be a major area of progress that I have not properly worked through - some things we can discipline ourselves over and some we need the strong arm of an expert I suspect given my enjoyment over carbs ….
I also think we need to find time and space to effectively manage stress in our lives so this is a positive and not negative dynamic - sometimes things happen we cannot control and this keeps day to day health management much more challenging …. Ie I suspect it is best not to have TSH blood checks in the middle of family crisis
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