Hello to all,
I just wanted to ask, hypothetically, if someone is a poor converter of t4 to t3, will this show an elevated tsh?
And also, would treating a non converter with levothyroxine be fruitless?
I ask because I have received my appointment with endocrinology dept for the end of this month, and cannot find the answers to some of my questions online, and want to be as armed as possible without any wrong info.
Thanking anyone who knows, in advance.
DandyButch
Bearing in mind that we're all different, my experience of poor conversion was high FT4, suppressed TSH and low in range FT3.
To know how well you convert, or not, you need FT4 as high as possible and to achieve this you need TSH low, probably 1 or below. Then you look at the FT3 and if this is low this shows poor conversion.
And also, would treating a non converter with levothyroxine be fruitless?
This depends. The first thing you would do is ensure that all nutrient levels are optimal because no thyroid hormone can work properly if levels are low or deficient, and less than optimal levels can affect conversion, particularly low ferritin.
Thank you for your quick reply.
I restarted the levothyroxine 50mcg 8 days ago, after not taking it for 6 days due to unbearable side effects ( which immediately improved after cessation.)
I am now back to the awful side effects including anxiety, palpitations, sweating etc. I have many different brands, including Teva, which I have deliberately avoided, but the side effects remain and get worse daily.
I know about the nutrients advice, but, my gp won't test for any, and I cannot afford to do it privately.
Do you have any cost free suggestions that I could try? Should I try a smaller, slower introduction of levothyroxine. May that help?
Whilst on the first leg of 50mg (before I stopped it for 6 days) I had been on it for around 10 months but gradually needed medication for high blood pressure and propranolol for anxiety!!!! Things go haywire.
I don't know how to move forward.
Do you have any cost free suggestions that I could try?
For what?
Should I try a smaller, slower introduction of levothyroxine. May that help?
It might do. Some people are very sensitive to Levo and have to increase in very small increments. But if you have tried every available brand of levothyroxine tablets and they all cause you problems, you should ask your GP to trial you on levothyroxine liquid to see if that is any better for you.
Thankyou SeasideSusie,
I have asked my gp already for a possible different medication, but I was told there was no alternative to levothyroxine tablets.
BTW my dad's nickname for my mum was Susie! Because in their era it was "Brother Bung and Sister Susie" not that I know who they were!
I am hoping the endo might help with the liquid.
DandyButch
I have asked my gp already for a possible different medication, but I was told there was no alternative to levothyroxine tablets.
Well, GP is either telling porkies, is totally ignorant of the treatment of hypothyroidism or too lazy to look into it 🙄
It's abundantly clear that liquid is available:
NHS website:
nhs.uk/medicines/levothyrox...
1. About levothyroxine
.....
Levothyroxine is only available on prescription. It comes as tablets or as a liquid that you swallow.
British National Forumulary:
bnf.nice.org.uk/drugs/levot...
Levothyroxine medicinal forms:
Scroll down and after TABLETS you will see CAPSULES and there are 3 dose sizes of Tirosint capsules and below that you will see ORAL SOLUTION which come in different dose sizes from different manufacturers (35 altogether). Admittedly they cost the NHS more but the way I look at it is if the NHS is willing to pay for medication and/or medical procedures for people with non-life threatening situations then there should be no problem providing this medication for patients who can't tolerate levothyroxine tablets which is a life giving hormone that we hypo patients cannot live without.
There may even be something in the NICE guidelines that state that oral solution should be considered if tablets aren't tolerated - SlowDragon do you know of anything?
There is something about prescribing oral solution, I've just seen a reply SlowDragon did for someone else:
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Sorry SlowDragon , I've made a note of this now 
Dandy, you cannot tell about conversion from TSH alone. To look at conversion you need to look at the levels of TSH, ft4 and ft3 from the same blood draw once the person is on a high enough dose of t4 only to either take ft4 up to the top of range or over and or TSH down to 1 or under. Until your ft4 level is high or your TSH level is around 1 you can't say you are a poor convertor.
Thank you Lalatoot,
Unfortunately my gp won't test for t3. Only tsh and t4.
A poor convertor could be on levothyroxine only. However the level of levo would need to be high enough to take their ft4 to probably over the top of range. Only with a high ft4 would they have ft3 high enough not to be symptomatic.
Which brand of levothyroxine have you tried
Wockhardt only make 25mcg tablets
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord make 50mcg and 100mcg
Lactose and mannitol free
Aristo - 100mcg only
Glenmark, very new to market
Try taking 25mcg waking and 25mcg at bedtime
…..can make it easier to tolerate
See DIFFERENT GP
Request testing, as per guidelines
Coeliac blood test
Vitamin D
B12
Folate
Ferritin
Cortisol testing
Request referral to an endocrinologist
Roughly where in U.K. are you
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors
Some are NHS
tukadmin@thyroiduk.org
NHS England Liothyronine guidelines July 2019
Note that it says test should be in morning BEFORE taking levothyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
pubmed.ncbi.nlm.nih.gov/286...
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
pubmed.ncbi.nlm.nih.gov/273...
Vitamin D insufficiency was associated with AITD and HT, especially overt hypothyroidism. Low serum vitamin D levels were independently associated with high serum TSH levels.
pubmed.ncbi.nlm.nih.gov/300...
The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.
ncbi.nlm.nih.gov/pubmed/186...
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status
Low ferritin frequent in hypothyroidism
endocrineweb.com/profession...
NICE guidelines recommend testing for coeliac disease at diagnosis of autoimmune thyroid disease
Hello SlowDragon,
I have 25mcg Wockhardt, 25mcg MercuryPharma, 25 mcg Teva and 50mcg Almus. I have been on Almus this time round, 59mcg.
I am also due to collect 75mcg Almus from chemist, because my last blood tests, according to doctor, (before I stopped taking it for the 6 days) show I need to increase to 75mcg.
Those blood tests were taken early morning before any meds/food, only water. ( Last levo more than 24 hours before test)
The only brand that makes 75mcg is Teva
So if avoiding Teva…..
if prefer Accord (boxed as Almus via Boots or Northstar via Lloyds) get more 50mcg tablets and cut in half to get 25mcg ….because Accord don’t make 25mcg tablets
Or 25mcg tablets if like Mercury Pharma or Wockhardt
Beware Northstar 25mcg is Teva
Have you any feeling as to which brand suits best
Most of your symptoms suggest your under medicated…..but getting dose high enough can be difficult
Especially if you have Low vitamin levels ……this can make it extremely difficult to tolerate levothyroxine
Personally I had to be on propranolol to block anxiety and increase dose slowly upwards until I got to 125mcg ……more on my profile ….
The brands (except Teva which I didn't try at all, because of the bad press. I don't want to add to my woes unnecessarily) don't make any difference that I am aware of, all as bad as each other for me. At least I haven't noticed if any particular brand is better, or not.
Sorry, I am in Worcester Park, Surrey KT4
Try the Glenmark Levothyroxine from an independent chemist only. Lactose, mannitol and maltitol/maize starch/corn starch free. Gp may ignore completely your need for a more expensive oral solution.
Thank you for your reply Wua13262348
I have been back on the levothyroxine for 8 days, and back to feeling absolutely dreadful. I am, again, stopping them for now.
But thanks for your advice re: Glenmark brand.
My gp won't test for t3 either!
How much levothyroxine did you go back on
Which brand
Hello, Almus 50 mcg
Try splitting the dose
Cut tablets in half
Take 25mcg waking and 25mcg at bedtime
Can help reduce symptoms
Always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
No other medications or vitamin supplements within 2 hours of levothyroxine
Bloods should be retested 6-8 weeks after each dose increase
I have to take mirtazapine, antidepressant before bed. I had considered doing as you say, but didn't know how to fit it in.
What time do you eat evening meal and what time go to bed
Is there time to take levothyroxine 2 hours after meal and 2 hours before Mirtzapine…..probably not
Well, I must say that due to my digestion being totally up the creek, I have had to graze, because I couldn't eat a meal.
Has GP done coeliac blood test
If not get that tested BEFORE endocrinologist consultation
Do you suspect you might be lactose intolerant
Both gluten intolerance and lactose intolerance extremely common with autoimmune thyroid disease
Lactose intolerance often improves after year or two on strictly gluten free diet……
No, not yet.
I have ordered some vitamins, but have to wait for them to be delivered at the weekend.
I sent you a private message re seeing thyroid specialist endocrinologist
Click on “paper aeroplane “ top left
Dear Slowdragon,
I have my appointment for endocrinology, but the letter only mentions the name of, presumably, the consultant, and says I will be seen by someone under him in his team.
Vast majority of endocrinologists are diabetes specialists
Did you find private messages
Yes, thankyou. But, how do I get to see someone else?
Premature menopause strongly linked to autoimmune thyroid disease
Likely you have been hypothyroid a long time
ncbi.nlm.nih.gov/pmc/articl...
Conclusion
Thyroid autoimmunity is the most common autoimmune disease associated with POF. The finding of low DHEAS in a large percentage of patients (65%), suggests possibility of adrenal dysfunction. This requires further testing for adrenal reserve and adrenal autoantibodies.
Has GP done early morning cortisol test and testing for Addison’s
Low adrenal levels are common if been hypothyroid a long time. Adrenals may need support first
See flow chart here
Box for secondary hypothyroidism
Shows Cortisol should be over 200nmol
gps.northcentrallondonccg.n...
I had my adrenals checked. Cortisol high at 9am.I posted results on my other page which was my first conversation on this site.
Ok
That’s also pretty common. You should see cortisol levels fall back to normal range as thyroid levels improve as levothyroxine dose is increased over time
Adrenals try to compensate for lack of thyroid hormones…..so cortisol rises…..eventually they can get exhausted and cortisol levels start to drop
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