My lovely GP reduced my Levothyroxine again because my T4 was still too high and, after I told him I was having lots of symptoms, he referred me to an endocrinologist as he was concerned that I might not be converting T4 to T3 sufficiently.
The endocrinologist did blood tests and asked questions. She told me if there was any T3 present there would not be an indication to start T3 replacement. Also, as my TSH has been suppressed for about 5yrs and I was diagnosed with osteopenia in 2017 this is of concern.
I've just received her letter that discharges me back to the GP with no further action but pointing out that a T3 prescription may be available on private practice.
Blood Results
TSH 0.39 (range 0.3-5.5)
T4 15.1 (range 11.5-22.7)
T3 3.3 (range 3.1-7.0)
Vit B12 605, Folate 4.5, Vit D 73 (no ranges given but says all normal)
She also tested cortisol but no results are given.
(Blood test taken 9.30am - 24 hrs after last dose of Levothyroxine, fasted since previous evening and I take no supplements apart from prescription calcium+D3. Always get same brand of Levothyroxine)
Medichecks blood test a few months back showed a lowish active B12 30 (range 25.1-165) - GP said my B12 was good on the tests he did. And high Ferritin 225 (range 13-150) - GP did liver tests and all was good, said perhaps this is normal for me as it's always been high.
I don't know what to do now. I can't afford to pay out for a monthly prescription. I am so cold I could cry. Life is just too miserable. Any advice would be very much appreciated.
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Pinkcosmo
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I can't afford to pay out for a monthly prescription.
First question is what could you actually budget for? You can obtain Thybon Henning T3 for 50p per tablet (£50 per 100 tablets) on private prescription plus whatever you would be charged for the private prescription.
However, this is what I would be challenging:
I've just received her letter that discharges me back to the GP with no further action but pointing out that a T3 prescription may be available on private practice.
To me this says that the endo thinks you may very well benefit from T3 so my question would be why isn't the endo offering you a T3 trial on the NHS? In my opinion they can't say you would benefit from T3 then deny you treatment that is available on the NHS and make you pay for it. If an NHS doctor decided you needed a hip replacement then they wouldn't tell you to go and pay for it privately, they'd put you on the NHS list for treatment (and if you wanted it done more quickly then it would be your choice if you did it privately).
Vit B12 605
Medichecks blood test a few months back showed a lowish active B12 30 (range 25.1-165)
These are two different tests. The Total B12 test that yourGP has done measures the total amount of B12 - inactive and active. The active B12 is a small percentage of the total B12, approx 10-30%. We can have a good level of total B12 but it's the active B12 that's available for our cells to use that count. If active B12 is low this suggests B12 deficiency which should be investigated to find the cause. Pernicious Anaemia is one cause of B12 deficiency. Active B12 below 70 suggests testing for B12 deficiency according to Viapath at St Thomas' Hospital:
If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia.Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.
Folate 4.5
This depends on the unit of measurement for this test. Serum folate of less than 7 nanomol/L (3 micrograms/L) is used as a guide to indicate folate deficiency. However, there is an indeterminate zone with folate levels of 7–10 nanomol/L (3–4.5 micrograms/L).
If it's nanomol/L, nmol/L then it is deficient and needs treatment from your GP.
If this is micrograms/L, mcg/L, ug/L then it's low but not deficient but bordering on the indeterminate zone so supplementation would be a good idea.
Vit D 73
This will be nmol/L and comes into the adequate/sufficient category. However, the Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L.
If you wish to improve your level then to reach the recommended level from your current level, you could supplement with about 3,000iu D3 daily.
Retest after 3 months when adjustment of dose may be necessary if you've reached the recommended level as a maintenance dose will then be needed.
If you do supplement then there are important cofactors - magnesium and Vit K2-MK7 which should be taken when supplementing with D3. I can give you details of these if you wish, please ask.
The endocrinologist's letter to my GP says "T3 prescriptions may be available on private practice if she is keen to explore this option. If so, the dose of Levothyroxine would have to be adjusted to a lower dose."
I feel like I'm going round in circles and I've not really got the will, motivation or knowledge to challenge the endocrinologist. As all my thyroid results came back in range I'm not even sure T3 replacement would make any difference to my symptoms?
I sent my GP the Medichecks active B12 results and he followed up with liver tests and full blood counts that came back OK so I've just ordered B12 oral spray. I will read the links you've kindly provided before I use it!
I take prescribed calc-D 1000mg/1000 IU once per day so assumed my Vit D levels would be good - can you give me more details about cofactors please.
How do you get a private prescription and how much that would likely cost? I guess 50p per tablet would be cheaper than having the heating on so much atm!
I understand that it may be difficult to pursue this but if you can find the energy this is what I would do.
The endocrinologist's letter to my GP says "T3 prescriptions may be available on private practice if she is been to explore this option. If so, the dose of Levothyroxine would have to be adjusted to a lower dose."
I would write (so that I have a record) to the endocrinologist quoting this and asking why it will be possible to have a private prescription but not an NHS one. Ask for a written reply. Let them give you a reason.
As all my thyroid results came back in range I'm not even sure T3 replacement would make any difference to my symptoms?
TSH 0.39 (range 0.3-5.5)
T4 15.1 (range 11.5-22.7)
T3 3.3 (range 3.1-7.0)
They may be within range but they are very low, FT4 is 32.14% through range and FT3 is a paltry 5.13%. It's low that causes symptoms. Raising Levo might raise FT3 a little, as well as FT4, but your conversion is poor so your FT3 is likely to remain comparatively low. To be honest, increasing Levo as a first step might be an idea, get that higher, see what FT3 is like and if it stays low you have the evidence you need that you also need T3.
How do you get a private prescription and how much that would likely cost? I guess 50p per tablet would be cheaper than having the heating on so much atm!
I assume as she's mentioned it the endo might be willing to write a private prescription, but she might mean that you may need to see her privately to do this. Otherwise, ask her how you get your private prescription.
It seems everything started going down hill when this clinical pharmacologist joined the firm.
Is the original doctor still there who was " on side " and help you build up your medication to optimal before this " new broom " started sweeping away and cutting costs ?
My GP is lovely and seems genuinely concerned about my symptoms but I guess now that the endocrinologist has told him to keep my TSH "between 1-2 to avoid over treatment ... and worsening bone density" he will not up my dose again.
Looking back at your post showing 2 sets of graphs your conversion is going out from where it was originally seven years ago where you had a good level of Free T 3 and felt happy that you had found a doctor who knew how to treat and manage " thyroid " and your TSH was 0,10 with a T3 at 5.20 and a T4 at T4 21.10 :
The problem is the person now professing to be a clinical pharmacologist.
Your doctor needs to be made aware of what has happened and you have the blood tests to prove your point - look at where your Free T3 was years ago and look at it now - once on any form of thyroid hormone replacement you should be monitored and dosed on your T3 and T4 blood test results and not a TSH.
The TSH was originally introduced as a diagnostic tool to help identify a person suffering with hypothyroidism.
The TSH was never intended to be used once the patient was on any form of thyroid hormone replacement as then you must test and measure the Free T3 and Free T4 to confirm that the T4 is converting to T3 which you clearly achieved and with a good T3/T4 ratio of 4.05 back when your doctor was monitoring and treating you.
When not on any form of thyroid hormone replacement a low / suppressed Thyroid Stimulating Hormone is totally different to a low/ suppressed TSH when on any thyroid hormone replacement.
When optimally medicated, with sufficient thyroid hormones circulating the TSH isn't needed as you've enough thyroid hormones circulating - so you test all the parameters - the TSH, the Free T3 and the Free T4 - and they need to be seen in conjunction with each other and ideally with around a 1/4 ratio T3/T4 :
Sadly in primary care, I know all too well, that we are monitored on just a TSH blood test, and the T3 and T4 rarely run and this is why we are forced into private blood tests in order to know what is happening, what's gone wrong, and what can we do to feel better.
Last time I read a single blood test cost just under 1 pound to process in the laboratory.
So presume the 3 we need as a basic requirement for testing and monitoring thyroid hormone replacement is too high a cost for the NHS and we are not worth the bother.
I now self medicate with full spectrum thyroid hormone replacement and am very well having been refused any help through the NHS when becoming seriously unwell monitored and dosed on a TSH blood test.
I monitor my own bloods yearly, as I also supplement vitamins and minerals and am much improved going my own way. as I found fighting " the system " simply exacerbated my symptoms.
P.S. Too low a levels of Free T3 is just as " dangerous " as too high a level of Free T3 :
The issues surrounding a low TSH and bone density are another line of NHS dogma that is questionable.
Thank you for your detailed message - I am learning a lot!
My GP has always been great but I think once my T4 went too far above range he had to go along with the clinical pharmacologist and reduce the Levothyroxine. I'm sure he will not raise it again against the endocrinologist advise.
I'm sorry you are in this situation but the endo is totally " out of order " in writing such a letter and wonder if she's canvassing for a private referral .
The accepted conversion ratio when on T4 only is said to be 1 / 3.50 - 4.50 - T3 / T4 with most people feeling at their best when they come is at around 4 or under :
So to find your conversion ratio of T3 / T4 you simply divide your T3 into your T4 and I'm getting yours coming in at 4.57 - so showing your conversion compromised and going out from centre.
Your T4 is only around 32% through the range with your T3 on just around 5% through :
We generally feel at our best when our T4 is in the top quadrant as this should give us a decent level of T3 at around a 1/4 ratio :
If you look back at the graphs and results you shared with forum members some 7 months and 6 years ago you can see how clearly things have changed and hope you will draw your own conclusions as to what your next best step is back to better health.
Not sure there's anything I can say that would be helpful, but you are now very under-medicated. Despite your TSH being low, your FT4 is only 32.14% through the range, and your FT3 a teeny-weeny 5.13%. That is obviously not high enough. A person with no thyroid problems (euthyroid) would have an FT3 about 50% through the range, but hypos usually need it higher. And, you may be a poor converter but you just haven't got enough T4 to convert, anyway. You desperately need an increase in dose - probably more than one.
Your bone density has nothing to do with your TSH. The TSH only has two jobs: a) stimulating the thyroid to make more hormone (not relevant because your thyroid can't) b) to stimulate conversion of T4 to T3. It's true that in order to convert well, you would need a higher TSH, but as I see it, the problem is that your pituitary is mal-functioning as well. Normally, with Frees that low, your TSH would be a lot higher. But the pituitary is having problems making enough. But, that has nothing to do with your bones. Have a look at this:
Thank you grey goose - your message is very helpful!
After the endocrinologist visit I was convinced my bones would be crumbling soon because my TSH has been low for 5 years but the article you linked shows this is not the case.
I'm sure my GP will not increase my dose given the endocrinologist's letter that all is within range and to maintain TSH between 1-2.
I will read everything that has been linked and see if addressing Vitamins, folate, etc. helps.
Whilst optimising nutrients is essential, it won't compensate for under-medication. And, if your GP is going to try to get your TSH above 1, he is going to reduce your thyroid hormones to practically zero! Then, you really will be very unwell. That endo wants striking off! He has no idea what he's talking about. He' the kind of doctor I want to greet with 'hi doc! how many patients have you killed today?'
The only supplement I take is prescribed Calcium-D 1000mg/1000 IU once per day. I've been taking this since bone density scan 5 yrs ago. I thought as it contained Vit D that would be sufficient.
I echo what SeasideSusie recommended "I would write (so that I have a record) to the endocrinologist quoting this and asking why it will be possible to have a private prescription but not an NHS one. Ask for a written reply. Let them give you a reason."
I’m in Cheshire West. I could not get T3 via the NHS. My T3 result was very similar to yours. I was only converting 8%. I had to go private for a 3 month trial. I travelled to Oxford. T3 was a huge success for myself after it was prescribed within two consultations Eventually I was referred to an NHS Endocrinologist at Halton Hospital by my GP as the Countess Chester refused point blank to prescribe T3 even though I could barely walk at the time. Halton under pressure from my private only Endocrinologist finally agreed to prescribe. That was over 2 years ago now. So far so good!
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"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)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
I'm feeling a bit overwhelmed atm but will work my way though it all and make notes.
I really feel my GP will not increase my Levothyroxine. I'm currently taking 125mg reduced from 150mg 6 months ago when my FT4 was 27.1(11.5-22.7) & FT3 4.8 (3.1-7). Even though I felt much better then.
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