Thyroid meds GP won’t increase shall I up myself ?

[NellieShoe]

I have Hypothyroid and I am treated on 75 mcg Levothyroxine.
3 years ago I was gaining weight. The dose of meds was then 100 mcg and I managed to lose 19 pound doing WW quite easily.
As my weight decreased GP amended my meds as I was slightly out of range and leaning to hyperthyroid. Anyway 3 months after GP stopped my contraceptive pill due to my age and I now take HRT. Since then I have gone up 2 Dress sizes and gained several stone in weight. This is despite exercise and WW intermittent fasting and sticking to 1400 Kl. I don’t even drink alcohol. I am exhausted constipated retaining water in upper arms and legs yet because my TSH and T4 are within range they won’t increase meds. My point is if I am significantly heavier than before my dose isn’t high enough and I am sure the reason I cannot lose weight ! How can I get them to listen to me. ?
I am symptomatic of under treatment.

@NellieShoe I'd feel awful with TSH at 2.9.

I''my 64 now and to be entirely honest weight management has been far more of an issue since peri 20 years ago. I just about manage to hover between normal and overweight. I really think it's more to do with that than the thyroid.

Your vitD ideally needs to be near 100 so if it's towards the bottom, take the 4000 dose for three weeks and then reduce to 2000 and stay on 2000. i think there's something about Vit needing to be good to help the Levo to absorb.

The British Thyroid Foundation has brilliant advice - do check out their website.

PS: I had a health scare a couple of years ago and cut out: refined carbs, sugar, wheat, and bad fats. Within a couple of weeks my aches and pains and every bit of eczema had disappeared. I am convinced it was the wheat. I have a piece of bread or pasta about once a week now but we eat so much wheat nowadays with pasta, and pizza thrown in.

Ferritin was 11 so classed as normal range is 11.0 - 306.8
Vit D was 65.6 range is 50-150

Yes Vit D is lower end of the range 65.6

Also to mention I have constant heartburn not sure if this impacts absorption ?

Btw I don’t take antacids and if I did I would leave a gap of a few hours but mostly I just put up with it

It's always been recommended to take levothyroxine in the morning. Half any hour before coffee, etc. I've always had to be out of the house by 7.30am so no chance. Also, I forget morning meds due to the scramble.

My endo raised his eyebrows 35 years ago when I put my foot down about taking it at bed time. At bedtime I don't forget it. It might be worth trying.

I would address the low ferretin and vitamin d before doing anything else, as low iron in itself can cause tiredness and vitamin d has an influence over metabolism. Do you take vitamin pills?

Same, I always take mine at night

I’m one of those lucky 14%.
Hypothyroidism diagnosed 1997
200 mg of Levothyroxine forever.
I complained about feeling no difference.
completely ignored as mother of young children TATT (tired all the time) .. just got fatter until I had gastric sleeve in 2018. Lost 4 stone but couldn’t budge more. Thyroid dose remained the same . Until..

May2024 I started Mounjaro. It’s miraculous and has changed my life. Started at 95kg and reached goal in November at 64kg. I maintain on 6mg every 10days.

my experience is that GPs are uninterested in thyroid and won’t refer to endocrinology unless v obvious problems

OP - looking at your results you are definitely under medicated and showing typical hypo symptoms. GPs usually only look at your labs and will pretty much ignore how you feel (wonder if they'd be so happy to do so if they were the ones affected!). So you can feel at death's door but if your TSH is within range (a very stupidly wide range where many are actually ill) they won't do anything. Your TSH is 2.9 which is too high, it needs to be around 1.0.

Your FT4 is way, way too low, no wonder you feel dreadful, it's just barely in range. They haven't measured your FT3 (the active thyroid hormone). That's because labs make the decision, if your TSH and FT4 are 'in range' then they won't measure FT3. I'll bet yours in on the floor as your FT4 is so low.

Also, you've the typical low ferritin so commonly seen in those with hypothyroidism - you need to up your iron intake either by eating more red meat, or supplementing (probably best with a non-heme iron source as that's more readily tolerated).

Re your heartburn. You don't have high stomach acid, please don't take antacids. You have LOW stomach acid (very, very common amongst those with hypothyroidsim) and as such won't absorb your nutrients very well. There are a number of ways to help with this. You can try taking dilute lemon juice or dilute apple cider vinegar about half an hour prior to meals (increases stomach acidity). You could try taking Swedish Bitters (liquid form, very bitter herbs taken just before a meal to stimulate stomach acid). Or you could take Betaine HCl (can find on Amazon) with meals (with food or just after). Try one capsule with a meal, if that's not enough to prevent heartburn, raise to 2 capsules, and so on.

Just another note: you said taking more Levo made you 'head towards hyperthyroid'. Your GP isn't correct. To be hyperthyroid you'd need over range TSH, FT4 AND FT3.

It will be very, very hard to convince your doctor that you need an increase as they'll be fixated on labs. Your only recourse is to source and buy Levothyroxine online (easy enough to do) and try increasing yourself, and doing your own labs to monitor by finger prick blood tests. Otherwise they will, in effect, be keeping you ill.

Agree with all the above, you need to speak to your GP with facts not emotions, explain you TSH should be lower as your taking levothyroxine, and your T4 is barely in range, ask to trial an increase and retest in a few months time.

It's a constant battle, myself and my mother have it constantly, but advocate for yourself, the doctor looks at some figures on a page, your living with it.

Thank you such an insightful post shame you can’t advocate for me 🙂
I have loads of the tablets but only the 75mcg but if I cut one into 3 and take a third then it may take me to 100. I will message with all the info you have given me and request a 6 week trial then bloods.
I’ve been shopping today and struggled round the shopping centre I ached so much and joint pain. I’m exhausted. Only went to 4 shops.

Yes I will definitely ask for a trial of increased dose. Thanks.

I wish I could afford weight loss injections but I feel they won’t help the other symptoms so would rather they medicate me adequately.

@AlteredStater When I message the GP and state that my levels as being barely in range etc. Is there a source I can quote or any idea how to word it ? Sorry if I’m a pain.

Just a warning that overdosing on thyroxine causes hunger.

I had an endocrinologist in the 80s who allowed me a very high dose because I was desperate to lose the 20kgs I had gained before I could convince the GP to run a blood test. He warned that he had never had a patient who had managed to control the ravenous hunger that comes with taking more levothyroxine that necessary, but was willing to let me find out if I was an exception to the rule.

After a few weeks on the higher dose I was constantly starving, I'd eat a huge meal and keep eating more. I didn't feel satisfied until I'd stuffed myself into a bloated stupor, and would fall asleep only to wake the next morning with rumbling guts and the feeling that I was dying of starvation.

When I saw him for a follow up consultation after 3 months I'd gained another couple of kilos, and was ready to agree with him that I was not the exceptional patient who was able to control their increased hunger and use the higher dose to lose weight.

It was such a massive relief to get down to the correct dose (which was still a lot higher than the GP considered necessary) and go back to eating normal sized portions and not eating between meals. Though I never did manage to permanently shift those 20 kgs. Every decade or so I'd go on a diet (Weight watchers, slimming world, keto, Lighter life) and get down to normal BMI, but a few years later they'd be back, with a few extra kilos to keep them company.

Edited to add that after 40 years of being morbidly obese I recently lost 82kg (12.75 stone?) and the 300mcg dose that I'd been on since 1987 is now too high and has had to be reduced to 200mcg. Which has had the side effect of making the Mounjaro I take for diabetes a lot more effective. I envied all the people saying they had to remind themselves to eat at mealtimes and couldn't finish a whole portion, because I still had to use quite a bit of willpower to stay at a calorie deficit and continue losing weight. Now that I'm on 2 thirds of the previous dose I'm the same, I have to set an alarm to remind me when to eat, and there is no longer any willpower required to resist the lure of the Easter eggs.

You'll find a lot of help with that on the HealthUnlocked forum (Thyroid UK group) where they're very experienced with helping people such as yourself. 😊

https://healthunlocked.com/

Thank you I will take a look 🙂
I am so worried that the GP won’t take me seriously how awful I feel!

You have my every sympathy. As a pp has said if you hop over to the weight loss threads (particularly the slow losers club) you will find a lot of us who are hypothyroid or have other endocrine disorders.

I am hypothyroid. Have been fat for years - lose half a stone and then put more on! I started mounjaro with a bmi of 29 in October last year. Hypothyroidism is a known comorbidity for weight gain (as is high cholesterol which I also have). I also take sertraline for depression (felt achey/tired all the time). I am only on 50mcg of Levo. Have been to my gp to argue about them just testing my tsh (not t3 or t4) and asking to have my medication increased (they refused). Got really so down about being fat and feeling awful, so I paid for Mounjaro as I reasoned that I’d do all I can to lose weight and if I’m still exhausted I’ll pay for a private endocrinologist (have found one who is head of thyroid disorders at a leading London hospital). I’m now in my seventh month since starting MJ. I’ve lost one stone and 0.5 pound. I’m starting to feel a bit better than I did with fewer aches and pains even though I’m still not half way there with my weight loss!

Sending you best wishes.

Thanks maybe I should be asking for them to prescribe weight loss meds if they won’t up my dose.

They are not available on the NHS you’ll have to buy them.

I understand thanks

I asked if I could have an increased dose as I had gained 4 stone which I blame on my thyroid and I thought it made perfect sense 😅 I’m on 125mg mon-fri and 150mg on weekends and the Dr said no because too much causes brittle bones so I wouldn’t up it yourself plus you’d soon run out of meds. Defo have a chat about it though!

They're completely wrong about it causing brittle bones (and A-Fib!). If you ask for proof or research papers they won't be able to give you any. However it doesn't make sense to increase levothyroxine (T4) without testing your FT3 as well as FT4 so you can see how well you are converting the supplied T4 into FT3 (the active thyroid hormone). Some people can't convert well due to a genetic defect.