Totally fed up!!

[Minkymo]

So spoke to my doctor this morning as I feel like total crap! She has lowered my Levothyroxine as my tests showed I was overmedicating from 150mcg to 125mcg. Could someone tell me how long it could take for me to stabilise. I have asked her to check my T3/T4 levels at my next blood test. She refuses to listen to me about any other treatment and just told me not to blackmail or threaten her even though I was not rude and just asking. She said she will write to an Endo for advice but I really don't hold out much hope!

[Clutter]

Minkymo,

What are your thyroid results and ranges?

It usually takes about 7 days for the higher dose to wash out before you feel any improvement if you are over medicated but it really depends on how much you are over medicated. You can speed this up by skipping Levothyroxine for 2-3 days. You should have a follow up thyroid test 6-8 weeks after reducing dose to check levels.

Levothyroxine is the usual NHS treatment for hypothyroidism. It is increasingly difficult to get Liothyronine (T3) prescribed due to the extortionate cost and most GPs require recommendation from an NHS endo before prescribing T3.

FT3 is rarely tested in primary care now and if your GP can't order it, or the lab declines to test it, you can order private thyroid tests via thyroiduk.org.uk/tuk/testin...

[Minkymo in reply to Clutter]

(Jan 17) HbA1c 66mmol/mol 20-42mmol/mol.

Serum TSH 0.01mlU/L. 0.35- 494mlU/L.

Serum Folate 7.6ng/mL 3.1- 20.5ng/mL.

B12 444pg/mL 187-883pg/mL.

Serum Ferritin 47ng/mL 20-204ng/mL.

(Jan 15)Serum Free T4 13.6pmol/L 9.01-19.05pmol/L.

Serum Free T3 4.2pmol/L 2.63-5.7pmol/L.

I will have new Free T4 & T3 tests done in 6wks

[Clutter in reply to Minkymo]

Minkymo,

TSH 0.01 is suppressed but that doesn't mean you are over medicated. It's never a good idea for dose to be reduced based on TSH result. If you are over medicated FT4 and/or FT3 will be over range.

Arrange your next thyroid blood test early in the morning when TSH is highest and fast (water only) as TSH drops after eating and drinking. Take Levothyroxine after your blood draw.

HbA1c means you have diabetes, I think.

B12 can be deficient >500 which is why many here prefer to have B12 high or even over range. I would supplement 1,000mcg methylcobalamin with a B Complex vitamin to raise folate.

Many doctors think ferritin should be >100. Halfway through range is supposed to be optimal. You could supplement iron with 1,000mcg vitamin C to aid absorption and minimise constipation. Take iron 4 hours away from Levothyroxine and retest in 4-6 months.

[SlowDragon Administrator]

Do you know if you have ever had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo. (90%)

TPO is rarely checked and TG almost never checked. More common to have high TPO or high TPO and high TG, but negative TPO and raised TG is possible, though much rarer.

Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

If you have Hashimoto's then you may find adopting 100% gluten free diet can really help reduce symptoms, and lower TPO antibodies slowly over time too. You do not need to have ANY obvious gut issues, to still have poor nutrient absorption or low stomach acid or gluten intolerance.

Have you got a vitamin D test result? Can't see one on any previous posts either.

[Minkymo in reply to SlowDragon]

I found a globulin one on my records (Aug 15) 33g/L. 20-39g/L

[hachiko]

Just a thought; could you maybe go for the free T4/ free T3 tests somewhere else, at a private lab? (Solely high TSH is not a proof of over-medication, as it was pointed out by Clutter) Six weeks of waiting seems long.

[Minkymo in reply to hachiko]

I mentioned going for private blood tests to my Doctor & she told me not to waste my money as they would only tell me what I wanted to hear, so I don't think she would take any of those results seriously. Maybe that's why she said don't waste your money!!!

[Clutter in reply to Minkymo]

Minkymo,

An accredited private lab will measure your blood levels precisely the same way your NHS lab does. Your doctor's comment is ridiculous but you are probably right that her ignorance about lab testing means she won't take the private results seriously.

[hachiko in reply to Minkymo]

OK.. that is not an appropriate answer from your doc at all.

I see a private doctor, but use lab services of another accredited private lab, just because it is cheaper there to test. FIne by my doc.

If you can, change your doctor.

[helvella Administrator Thyroid UK in reply to Minkymo]

How does your doctor propose that works?

You have a blood draw (whether done by yourself or a nurse), and write a letter saying what you want the results to be, and send off to the lab? Lab throws your sample away and types your required results on their headed paper.

There are places that offer various tests which are very questionable, or downright cons. But when you are referring to an accredited lab, which might well also be used by the NHS, it is utter bilge.

[Hidden]

When I was on T4 only, I had a rather unconventional doctor who believed that in patients with Hashimoto's (autoimmune hypothyroidism), the TSH needed to be suppressed in order to keep the antibody levels in range. That was true for me; when my TSH was where my first doctor wanted (around 1.5), my antibodies remained high. When my TSH dropped below 0, they got much lower, and almost normalised.

Most doctors will insist on a so called normal TSH, or even refuse to test FT3 and FT4, but like others have pointed out, it's never a good idea to lower your dose solely based on the TSH reading.

My current doctor (not in the UK) who put me on NDT said that once you're on it, the TSH is a useless tool, and you need to go by free Ts and symptom relief. That may not be directly applicable to patients on thyroxine only, but I do think that symptom relief should be more important than lab results.

Your FT3 levels actually look quite good, especially since your FT4 levels are barely midrange. That could mean you are a good converter, which is good when on T4 only drugs.