Thyroid advice after TT: Hi first post. I’m at my... - Thyroid UK

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Thyroid advice after TT

Dlbia profile image

Hi first post. I’m at my wits ends with my GP. Up and down between 175 a day and 200 after a TT in 2013. She admitted the other day that I’ve never been optimal since my op and doesn’t know what to do with me. Numerous visits to endo with no luck. Attached my levels. After research I understand that I need T3 too. They never test me for this. I’m getting fatter and more depressed by the day. Any recommendations please? Attached pic of recent results. Am I going to have to go private for this?

25 Replies

Hello Dlbia

A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 and 10 T3.

T4 is a prohormone and needs to be converted by you body into T3 which is the active hormone that the body runs on, and read most people use about 50 T3 daily in order to function.

Your own conversion of T4 into T3 can be compromised if your vitamins and minerals are low and suggest you get your ferritin, folate, B12 and vitamin D checked and understand that we are talking optimal levels here and not just simply the ' in range ' results that the NHS work to.

T3 is said to be about 4 times more powerful than T4 so, just by having lost your own natural production of 10 T3 equates to 20% of your overall daily requirement, so in effect you have been down regulated on your overall daily wellbeing, no matter how well you convert the T4 into the T3.

Some people can get by on T4 alone, some people simply stop converting the T4 into T3 at some point in time, and some people simply need both these essential hormones dosed and monitored independently to bring these two hormones into balance and to a level of wellbeing acceptable to the patient.

I just think it makes sense that if there has been a medical intervention and the thyroid surgically removed or ablated with RAI that both these vital hormones are on the patients prescription, for if, and probably when necessary.

The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual wellbeing, you inner central heating system and your metabolism.

Living without a thyroid comes with its own set of problems as currently it seems the NHS is only prescribing T4 replacement and neither T3 nor Natural Desiccated Thyroid are easily obtained or encouraged by the NHS.

There will be more options to you of course, if you go private, but there again, you need to ensure you go to an endocrinologist recommend from the Thyroid uk list of ' friendly endo's. '

Looking at your results your TSH is in range and your T4 just under 50% through the range:

You are already on a relatively high dose of T4 but without a T3 result we can't know how well you are converting the T4. I would suspect because you are suffering symptoms you maybe not converting the T4 well enough, though there is room to increase your T4.

Can I ask why you had your thyroid surgically removed ?

I am with Graves Disease and had my thyroid ablated back in 2005.

I became very unwell some 6 years ago and thanks to this site and a couple of books I'm now back on track. I am having to self medicate as I wasn't able to secure a prescription for either T3 or NDT. and have had to undertake private blood tests, to include T3 readings, and monitor myself on the full spectrum thyroid hormone replacement I now purchase.

You might like to take a look at a book written by a doctor who has hypothyroidism.

Your Thyroid and How To Keep It Healthy by Barry Durrant-Peatfield : it is written in an easy to understand way, sometimes funny, but always insightful. We may now not have this amazing little gland but we do need to know what it does so we can try and compensate accordingly.

Dlbia profile image
Dlbia in reply to pennyannie

Thank you so much for your thorough response, I had my thyroid removed due to Hashimotos disease. Just so fed up of feeling rubbish. Think I’m going to pay for bloods including T3 and go from there. Please may I ask how you buy your meds? Is it online?

pennyannie profile image
pennyannie in reply to Dlbia

OK then, that's a plan.

There are two main private companies offering blood tests on the Thyroid uk website,

Medichecks and Blue Horizon, and they tend to have discount promotional days, so keep an eye over the next week or two.

I would suggest you get a full thyroid blood test panel to include the vitamins and minerals as previously detailed.

When you have the results start a new post and ask the forum members to help explain the results and ranges for you.

Depending on the results you will advised on your next steps back to better health.

It might involve supplementing vitamins and minerals, plus additional thyroid hormones.

These can be purchased on line, and when and if necessary you will be able source thyroid hormone replacements from safe suppliers, on recommendation of other forum members by what is called a 'PM' which is a private message and a facility to do this is available on this website.

P.S. I've just looked at the Medicheck website and the Thyroid Ultra Vit seems on offer :

Dlbia profile image
Dlbia in reply to pennyannie

Ah thank you so much. Everyone on here is so helpful, I feel a massive sense of relief already. Tomorrow I’m going to order the blood work then go from there. Thanks again

Girlscout2 profile image
Girlscout2 in reply to Dlbia

TT also, I also take NDT, and I've stopped seeing my GP for all things thyroid as they are bloody useless! Without a thyroid is VERY different than low thyroid, and I'm shocked they gave you an elective TT for hashimotos! That is quite incredible and irresponsible. My endo (brilliant man) told me a TT is more like brain surgery than having your tonsils out, and it affects the whole body. I'd really get in charge of your own care and get very educated about it all, GP won't help you, neither will an endo unless you hit the jackpot, which is rarer than rare. I take the thai stuff, doing fine xxx

in reply to Girlscout2

I agree, I have never heard about people having their thyroid glands removed because of Hashimoto' a bit curious as to why this was done in this case?

For those with a condition like you and I have there seems to be only one way forward, which is to buy your own NDT from Thailand and self medicate. I was forced to take this option when I lost all hope of any help whatsoever from my GP when, after 8 years of complaining, she told me she had many patients in the waiting room, NDT was "not licensed" and I should go home and sort myself out. Now, 6 years after starting NDT (brand Thyroid-s) I'm relatively fit and well and still complaining at the stupidity of the NHS.

It gave not an iota of improvement for me whatever dose of levo I took, when I took it, before/after food, whatever temperature or whatever vitamins, fruit, absence of milk or anything else, I ALWAYS felt rotten.

Only one way to find out, get some and take it instead of levo. Most unlikely to worsen symptoms.

Dlbia profile image
Dlbia in reply to Panda321

Thank you so much. Can I ask where you buy it from? Is it a website?

Also do I take it as well as thyroxine or instead of?

Jazzw profile image
Jazzw in reply to Dlbia

I wouldn’t necessarily go down the self sourcing route just yet. I’d go back to the doctor and ask if you could be referred to a different Endo. Some endos aren’t the greatest, but there are some who will prescribe T3. Worth finding out if you can find one of them.

I’d never advise going it alone without trying everything else first. I’m not anti doing so—that would be hypocritical as I take NDT, but my doctor wouldn’t help. See if yours will. Why should you pay if you don’t have to?

Dlbia profile image
Dlbia in reply to Jazzw

Thank you, I have seen several endos and 1 private before and not one has mentioned T3. I might do as you say and go back and insist on this now I’m slightly better informed. Thank you

Jazzw profile image
Jazzw in reply to Dlbia

Well, as you may have read, T3 is expensive in this country. It shouldn’t be, because it costs a couple of quid a packet elsewhere in Europe, but our NHS can be stupid over what it’ll pay for meds.

So, many of the endos won’t mention it, because they know that GPs will be unwilling to prescribe it. But some of us need T3, end of. Especially when you have no thyroid.

Dlbia profile image
Dlbia in reply to Jazzw

Thank you for your help I shall go back x

pennyannie profile image
pennyannie in reply to Dlbia

Yes, always try the NHS route first, as you might get ' lucky ' .

Some doctors will undertake the full thyroid blood tests for you, others will not.

It's a bit of a postcard lottery but of course, it's better having the doctor on side and supporting you if this option is there.

I don't believe anyone chooses to self medicate but when faced with a brick wall options are limited. Read all you can as you'll be better placed to understand your own situation and feel more comfortable going forward.

in reply to Jazzw

Just curious: is NDT (sourced on the NHS) cheap in the UK compared to T3? I'm asking because prescription NDT is terribly expensive in Belgium where I used to get mine. It's also not covered by health insurance as it's considered "organ therapy". That's why I switched to Thyroid-S. Even if Thai NDT has doubled in price in the past year, it's still a much more cost-effective solution than prescription NDT.

What is the cost approximately of NDT in the UK?

Before going down the NDT route and self-funding, you may want to try T3. It is possible to get T3 on the NHS, but it is consultant-only prescribed. And not all endo's will prescribe it. You can see any endo in the country - it doesn't have to be local to you. If you email Dionne at Thyroid UK she will send you the list of those known to be T3-friendly and you can see if any suit you. Then ask your GP to refer you. As the GP has already admitted your health is not optimal, and you've seen one endo already I can't see a refusal. I'd recommend having the full bloods done before you go, and posting the results here for comment, so you have something to show the new endo. Good luck x

Hi Dlbia....I lost my thyroid to cancer 3 yrs ago.

It seems to be pretty common practice to throw away the thyroidless patient once optimum thyroid levels are reach regardless of how your feeling and the best thing you can do is insist on the proper test be performed.

Good luck !

vocalEK profile image
vocalEK in reply to Batty1

Correction: Not once optimum levels are reached but rather once TSH is "in range."

I had a TT about the same time as you. I had asked for T3 but never got it. MY weight started going up 5 to 10 lbs a week , and hit 360, never had been anywhere near that before. I knew I didn`t have long at that rate so asked my Dr for T3 again, to my surprise he just said how much do you need. I told him the American Thyroid Association said people with A TT could be allowed 10mg T3 so I cut down T4 from 175mg to 150mg and added 10mg T3. Also started C-PAP for sleep apnea. Hadn`t had REM sleep in years and my body wasn`t able to regulate fluids. I lost 25lbs first month and 15 more the next, went on to lose a hundred lbs and don`t need C-PAP to sleep anymore. Had heart double bypass over 10 years ago so take quite a bit of meds, but am doing fine. I am 72. Sometimes, not often I will take a little T3 in the day if I feel I need it. Usually a little left over when I do refills and I save this to use as needed. Take my regular T4 & t3 at night so won`t be bothered by waiting 4 hrs from calcium or iron. MY GP is also my cardiologist. Hope this helps.

So so sorry to hear about your stunned as to the reason why your thyroid was removed. Have you copies of the letters written to your GP about this? Usually its Graves or Thyroid Cancer where TT is done. If not ask your GP for copies.

As you have no thyroid you will need more than levothyroxine. Any doctor that tells you different are talking rubbish! As they have removed your thyroid they do have a duty of care towards you so I wouldn't rush into the private route or self prescribing one. You will have to fight but please dont let them off the hook. They are responsible!!

If it were me I would indeed get the list of thyroid friendly doctors from Thyroid Uk. You have the right to choose who treats you and to a second opnion. Your GP sounds fed up with the predicament he/she are in and is fully aware they have made you ill and the meds you are given are not doing the job. So it sounds like they may well be quite supportive of you getting better treatment. To be honest from what you have said it sounds like your GP/Endo is going on the TSH result and not the thyroid hormones levels. This seems to be sadly common practise now despite the research evidence that shows that this leads to under treatment.

Secondly let your GP try one more time with the blood tests. Ask if she can put "No thyroid gland" andrequests TSH Ft4 & ft3. Ask her to check your B12, ferritin, folate and vit D. They may well be low as this can be a consequence -they need to be optimal not just in range and are important as they are needed to make best use of the thyroid hormones.

Make sure you get copies of all results and keep them, in a file with what meds and vitamins you are taking and signs and symptoms you are experiencing, your temperature and pulse rate first thing in the morning before rising. A log like this is useful as it not only shows about what needs correcting but also shows trends over time.

Keep posting on ths site!! There are some really clever and knowledgeable people on here who frankly know far more than GPs and many Endocrinologists. Endocrinologists often specialise in diabetes and actually know very little about the thyroid but some do specialise in the thyroid and some of those are very aware that a certain percentage of thyroid patients do NOT do well on levothyroxine alone amd need either T3 (liothyronine) added in, a Natural dessicated thyroid extract or T3 on its own.

You will need to be your own advocate am afraid so reading up and being kowledgeable and persistant are your best armoury. Thyroid UK have a list of books on their website.

Dlbia, Often people get the impression that if they've been unwell for some time on Levo, then adding T3 is the only option.

In my observation in the forum, the vast majority of people who feel unwell on Levo have just been on the wrong dose the whole time. Many of these people have the potential to feel loads better if they are just given enough.

Part of your picture is cut off for me, but it looks like you've got a freeT4 of 14(7.8-21).

This is quite substantial undermedication. Most people will need freeT4 high in range, in at least the top quarter of the range and some all the way over the top of the range, to feel well. At the moment yours is just about halfway. Anyone would feel rubbish on this dose.

You mention your doctor increasing and reducing your levels all the time, and with this low freeT4 its very unlikely it would be too high with just a 25mcg increase. I suspect your doctor is working on TSH only and is trying to keep the TSH comfortably inside the range. Most people will end up with it much lower once on a good dose, and those of us who have had cancer need to keep it low to prevent reoccurance. It's much much better to dose on freeT4 in the first instance, and very nice to have freeT3 available, too.

Solutions to this are difficult. Do you have access to other GPs who might know how to dose you better? Can you change surgeries? At first this is more of a doctor management issue. Private doctors can be just as bad, but worth they try if you've got plenty of budget for it. In the first instance this is more of a doctor management problem, as any GP with the will can prescribe you a sufficient dose of Levo.

There's also the option to buy extra Levo and top up your own dose. Follow best practice and adjust by 25mcg then hold for 6 weeks and get new tests before adjusting again.

I'd prefer to think about adding in T3 only after you've tried good freeT4 levels. Just because it keeps everything logical and gives you a good foundation to start. It will probably take you a few months to learn all that you need to to dose yourself, reading this forum every day is a great way to start.

I must admit That I don’t understand thyroid lab tests, but I’ll comment on related issues as I have no gland left either.

Because I am also diabetic and have chronic kidney disease, I eat small portions and try to exercise.. You should not eat until one full hour after taking thyroid medicine and take it at the same time every day.. I am mildly anemic and take iron.

I try to avoid “goitregenic foods for the most part such as broccoli, cauliflower, cabbage, and soy..

When lab testing is planned, I do not take biotin for 3 days, and do not take the Levothyroxine until after the test on the day I have the test which I do fasting.

The dose of that varies by weight, so if your weight is changing that is why your dose changes..

I also do not understand why so many people in the UK are on T3. I have not heard of anyone in the US on it but, of course, I only know a handful of people with thyroid issues.

In the US 170 million people have private health insurance.. The rest are in some sort of government program of which some are OK and some are not. Some here want coverage for everyone for free but others are afraid of the tax increase. Good luck to you.

Wow thanks so much everyone this is really helpful. I have no idea why they took my thyroid out for hashis, you kind of just trust that they’re doing what’s right for you and I felt so ill at the time I just assumed it was the correct thing to do. I’ve got tonnes of T4, so might try adding an extra 225 and see if that ups that level at all and go from there. I’m seeing my gp again in 6 weeks for levels so will see what happens taking 225 and also ask them to test my T3 and go from there. Thanks all I think I’m going to find this group really helpful x

Hey Dlbia,

I just read your post. I had a TT in 2007. I haven't been in good health since, and am particularly unwell at the moment. I've put on a bucketload of weight over the last year and a half. Anyway,

I just wanted to say 'hi' and let you know I'm with you in spirit.

I don't feel I'm in a position to offer advice until I understand more and define a helpful path for myself, but I am thinking of you.

Where you get ndt

Lora7again profile image
Lora7again in reply to tamina786

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