I was put on Levothyroxine 50mg at the end of March 2019. Since that time I have only had 2 thyroid blood tests done (still on the same dose) and the last of those 2 tests (on 7th November 2019) I only got done because I went to see my GP about my hair falling out and he suggested getting vitamins done and doing a thyroid test at the same time. (I will post those latest results here later on).
How do other people get tested 6-weekly? Does the GP have to suggest it? Do you have to see your GP first each time and tell him you want a blood test so that he can get the paperwork done for the nurse? Or do you just make an appointment to see the nurse and then tell her on the day you want a thyroid blood test done?
None of the GPs I've seen have ever suggested I get tested 6-weekly.
Sorry if this sounds stupid but before this thyroid problem was diagnosed I hadn't been to the GP in many, many years so I'm pretty out of touch with what's required. Thanks.
Written by
jo1001
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Under what circumstances would your gp changes your dose? Is it because you've not been feeling great on the current dose and you make an appointment to go and see him?
I know the latest problem with my hair falling out he asked me to go and see him 2 weeks after I get the results. If it hadn't been for the hair fall I feel like I would never get to see the gp or get further thyroid blood tests. Maybe as long as no major changes in my health I just carry on as usual?
Yes. If you have been on current dose for 8 to 12 weeks or longer and still don't feel well then speak to gp and ask for increase. 50mcg is a starter dose.
Despite Levothyroxine being the most prescribed medication and almost 2 million people in UK are on Levothyroxine........many GP's have only a scant idea what the difference between plain hypothyroidism and Hashimoto's
Your high antibodies confirm you have Hashimoto's
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.
So it's important to get TPO and TG thyroid antibodies tested at least once .
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
My doctors left me on the same dose for years without bothering to test unless I went in and complained about symptoms and asked about an increase. So THEN they would send me for testing and would do the levo increase if my TSH had done up (yup, that's all they were testing back then.)
I have had a lot of TFTs this year because back in December I sent my doctor a list of symptoms that were bothering me and asked for a trial of T3 if my Free T3 tested near the bottom of the range. It had never been tested before. As it turns out, it was a little below the bottom, so I got my trial, with retesting suggested in 6 to 8 weeks. At the time, my TSH was 1.79 (0.300 - 4.200 uIU/mL). FT3 was 1.9 (2.0 - 4.4 pg/mL)
She prescribed a 25 mcg Cytomel tablet, which I knew was too large a starting dose, so I titrated slowly by chopping the tablets into quarters and taking 1 a day, then 2 weeks later 2 a day, and then 2 more weeks later 3 a day, and finally up to full tablet after 2 more weeks. My Free T3 went up beautifully to 4.2, but she became alarmed because my TSH dropped below the bottom of the range. Rather than stopping, I suggested reducing the dose of Cytomel.
We then needed retesting. My FT3 dropped to 2.9 (2.0 - 4.4 pg/mL). That's only 37.5% through the range. I then suggested reducing my levo from 175 to 150 and increasing the Cytomel by adding a 5 mcg tab to the 1/2 of 25 mcg tab daily. After that my TSH went up, but not enough to suit her from 0.01 to 0.02, and FT3 actually went down again to 2.6 (only 25% through the range). Perhaps that's because my FT4 dropped from 1.6 to 1.5 (0.60 - 1.70 ng/mL) .
Three months later the TSH was back down to 0.01 but the FT3 had gone up to 3.2 (50% through the range. So next we tried lowering the synthroid to 125 mcg and leaving the Cytomel dose the same. I will find out the middle of next month how that has affected my numbers.
It's a matter of tweaking things to get acceptable results. As for the list of symptoms I originally complained about, 3 have shown some improvement (cold intolerance, ability to lose weight, and brittle nails). The other 3 on my list, fatigue (need for 2 hour nap after 7 hours of overnight sleep), swelling around the eyes, and thinning hair, remain unchanged.
I remain patient because I know that the body takes a while to respond to changes in thyroid medication. I'm just glad that so far my doctor has remained patient.
But my bottom line message is that often you have to ask for retesting, because it doesn't occur to the doctors that they need to do it.
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