My most recent results show my thyroid still needs to be re-medicated (long story but I came off Levo under the instruction of Dr Peatfield before he retired) but I am reluctant to go back on to Levothyroxine because it made me feel horrendous. I was previously taking 175mcg and my TSH still never fell below 2 but my head was full of cotton wool. After I stopped taking it my husband remarked that my face still looked exhausted but no longer vacant.
I’m being referred to an (NHS) endocrinologist but want to go armed with info so I can hopefully try something else- if such a thing exists?
My current levels (Medichecks):
TSH 6.8 mIU/L (0.27-4.20) out of range
FT4 10.4 pmoI/L (12.00-22.00) out of range
FT3 5.28 pmoI/L (3.10-6.80) 59% range
TPO 266 iu/mL (<34.00) elevated/ brought down from 600 with gluten, dairy & histamine free diet
Tg 442 iu/mL (<115.00) elevated
Vit D 86.6 nmoI/L (50.00-200.00) 24%range
B12 37.4 pmol/L (37.5- 188) just out of range
Folate 4.17 ug/L (3.89- 19.45) 1.7% of range
Iron 22.8 umol/L (5.8- 34.5) 59% range
TIBC 70.8 umol/L (45-81)71% range
UIBC 48 umol/L (24.2- 70)52% range
Transferrin 32% (20-50) 40% range
Ferritin 25.4 ug/L (13.00- 150.00) 9% range
Cortisol & DHEA measured via DUTCH test
Total Saliva Cortisol 14.73 ng/mL (9.60- 19.30)
Afternoon Cortisol 0.38 ng/mL (0.4- 1.5) below range
Night Cortisol 6.32 ng/mL (0- 4.8) above range
Melatonin 10.1 ng/mg (10-85)
Total DHEA 1212 ng/mg (500-3000
DHEA-S 16.4 ng/mg ( 20-750) below range
I’m taking Vit D with K2, but will increase back to 4000iu in-line with Vit D Council , Magesium glycinate & Lthreonate, selenium, Vit C & zinc.
Under supervision of a Functional Nutritionalist I’m going to increase iron & B12, and introduce a bit of meat protein back into my diet (although I haven’t quite made peace with that yet).
Any advice on an alternative solution to Levothyroxine would be greatly appreciated. The GP recommends starting at 25mcg but the NICE guidelines of 1.6mcg/ kg of body weight would put me back on a dose of 100mcg
Thank you in advance
Rosi x
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Mrsdafox
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Were those labs done after you'd come off levo? If not, you are extremely under-medicated.
TPO 266 iu/mL (<34.00) elevated/ brought down from 600 with gluten, dairy & histamine free diet
Tg 442 iu/mL (<115.00) elevated
Forget the antibodies. They may have reduced but they could just as easily go up again. Antibodies fluctuate all the time, so there's no proof that your diet has reduced them. But, even if you got rid of them competely, you would still have Hashi's, that doesn't go away. And, antibody levels are not a measure of the severity of the disease, just an indication that you have it.
I was previously taking 175mcg and my TSH still never fell below 2 but my head was full of cotton wool.
If your TSH never got below 2 on 175 mcg, there were two possible problems:
a) you weren't absorbing it very well
b) you weren't converting your T4 to T3 very well
But, just measuring the TSH won't give you any information about which it was. You would need to see your FT4 and FT3 tested at the same time to understand what was going on.
If you weren't converting well, and your FT3 was low, you would obviously still be feeling bad because it's T3 that causes symptoms, not the TSH.
Any advice on an alternative solution to Levothyroxine would be greatly appreciated.
Well, so far, we have no proof that you need an alternative, because we don't have all the information.
There are other possible alternatives to T4 monotherapy:
* T4 + T3
* T3 monotherapy
* NDT - which is the so-called 'natural' thyroid hormone replacement, made from pig thyroid, and containing both T4 and T3, but in a fixed ratio.
T3 is very difficult to get prescribed on the NHS - even with proof that you need it, which you don't have at the moment. And NDT is much harder to get prescribed. The majority of people that take these buy their own, and self-treat - or have very understanding GPs/endos that assist them.
The GP recommends starting at 25mcg but the Vit D Council guidelines of 1.6mcg/ kg of body weight would put me back on a dose of 100mcg
The GP is being rediculous wanting to start you on 25 mcg at your age. It should be at least 50 mcg. But, what has the Vit D Council got to do with levo - I assume you are talking about levo there?
But in any case, forget dosing by weight. That's a total red herring. The protocol always was - and in my view still should be - to start on 50 mcg, retest after 6 to 8 weeks, and increase dose by 25 mcg. And continue like that until all your symptoms are gone and you feel well - or as well as you can be.
Dosing by weight might be ok for a starter dose, but would probably be too much for some people. But, after that, you should adjust as necessary. Those recommendations don't mean you should stay on 100 mcg - or whatever, according to your weight - for the rest of your life. You need what you need, and it's time doctors understood that and stopped looking at the TSH.
Thank you for such a detailed response. My results are on zero Levo- so my base line requirements for medication. I will definitely talk to my GP about increasing the initial dose to 50mcg (sorry that is confusing, I edited the post upon publishing it to read NICE guidelines as I had a bit of a brain fart moment). The GP herself, though, admitted that she didn't know enough and would refer me, so I'm hoping to find a sympathetic Endo (my last one was *awful*!)
The last bloods I had done where I had managed to get my FT3 measured aswell was when I was taking 125mcg:
TSH: 2.15 mlU/L (range 0.27-4.20)
Free T4: 15 pmol/L (range 12-22)
Free T3: 4.7 pmol/L (range 3.10 -6.8)
Serum anti TPO antibodies >600 ku/L (range <34)
By the time I was on 175mcg the GP refused to test T3 and I couldn't afford to have them done privately.
My Functional Nutritionalist suggested I might absorb NDT better but it's not her area of expertise and I don't know enough about it (yet!)
Well, there you're just under-medicated. I wouldn't say you had an absorption problem. But, you would need a raise in levo to get your TSH down to 1 or under to see how well you converted.
125 mcg is not a huge dose. A lot of people need a much higher dose than that. So, maybe if, at that point, your doctor had continued to raise your dose, you might have found you did pretty well on levo only, and didn't need the hassle of trying to get hold of NDT/T3.
Endos are usually pretty useless, even if they are nice. Because the vast majority are diabetes specialists that know next to nothing about thyroid. Unfortunately, GPs don't know that and refer their patients with good intent, only to find the situation gets worse! If the endo will even see you, that is. But, they're pretty fussy about who they accept as patients.
Do you know you have Hashi's? That can make dosing more complicated. But, according to those results, you were definitely under-medicated.
thank you- yes, from 125 I went to 150 then to 175, but felt no better and increasingly lost all use of my brain. I got up to 300mcg when I was pregnant and still felt awful (but put it down to pregnancy). It was at that point I saw Dr Peatfield who felt I was overmedicated (entirely) and brought my dose down before working on my adrenals, but then ill health meant he had to retire. I don't think he ever intended for me to be on none, but it made such a difference to the way my brain could think.
My last Endo was a diabetes consultant and when I got so upset about having no quality of life he referred me for a psychevaluation. I'm going to specify who I am referred to this time- ideally an Endo from the Thyroid UK list, but in full knowledge it could still end in tears.
I don't necessarily think/ know NDT/ T3 is the answer I just hope to speak to someone who don't immediately close it down as an option. Wish me luck!
PS, yes I know I am Hashi's- not that an actual Doctor has ever said as such, I was just told I had elevated antibodies (600) as if it was normal. It was thanks to this forum and further reading that I began to understand the implications.
Well, when you're pregnant, you do need extra T4, because it goes to the baby. But, it would have been interesting to see full thyroid labs when you were on 175 mcg. As I said before, if you weren't converting enough to T3, then you would feel awful.
My last Endo was a diabetes consultant and when I got so upset about having no quality of life he referred me for a psych evaluation.
Idiot.
I don't necessarily think/ know NDT/ T3 is the answer I just hope to speak to someone who don't immediately close it down as an option. Wish me luck!
Of course I wish you luck! But, even if they say they will consider it, doesn't always mean they will because they're so very ignorant about T3. A lot of them don't even know what it is! lol
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
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.
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
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), you might be able to stop the B12 and just carry on with the B Complex.
But if mainly vegetarian may need separate B12 ongoing as well as vitamin B complex
As your B12 is low, don't supplement until you have excluded that you don't have Pernicious Anaemia which is another autoimmune condition and a person has to have frequent B12 injections.
Your GP has first to exclude that you do not have Pernicious Anaemia and if it is low we supplment with B12 injections given by the Nurse in the surgery. If we do have Pernicious Anaemia it means our stomach cannot absorb B12 at all and we have to have B12 injections regularly as we want to avoid stomach cancer. That's the mistake my Mother's GP made by withdrawing B12 injections and telling her she needed no more injections. It caused her death due to stomach cancer.
Thank you- gosh I just read your profile and send you so much love for the loss of your Mother. My Mum very unexpectedly died last month after a lifetime of not being given the right info which I am certain also caused her untimely death. A very definite motivation to sort myself out and make sure I am armed with as much info as I can. Thank you again for sharing your expertise x
That's what this forum is for - to try to help others avoid unnecessary symptoms and to restore health where possible.
It's a pity that many 'modern' doctors/endocrinologists don't appear to have the knowledge our 'old fashioned' doctors had as there was no blood tests then but nowadays we do have tests and as well as the results, the ranges are required so that responses are more apt. Some doctors don't appear to understand results or ranges.
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
Very important to regularly retest iron and ferritin…..often needing to improve low iron/ferritin with supplements
If taking iron supplements, full iron panel test needs redoing regularly at least 3-4 times year to check iron not too high
Thank you so much for your incredibly detailed responses. I definitely need to bring animal protein back into my diet, as I am allergic to yeast so have also not reacted well to B12 supplements. I will also look at increasing ferritin with liver capsules. I eat an incredibly rich vegan diet and don't think I could consume more seeds and iron/ B vit rich plant based sources if I tried. So back to meat, at least in the short term, it will have to be.
Thank you for all the links you have sent through- so brilliant of you. I will work through them and ensure I am working towards optimal levels of everything. I am working with a Functional Nutritionalist on this aswell.
May I ask where you obtained your level of knowledge? I am keen to become my own healer/ understand the metabolic chain of events but get so overwhelmed with where to start. I might consider working towards a formal qualification once I (hopefully) feel better. I have really struggled to find anyone who knows enough about it all- this forum has been such a lifeline!
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Test results feel rubbish!
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