Struggling after total thyroidectomy 3 years ag... - Thyroid UK

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Struggling after total thyroidectomy 3 years ago and not feeling great since

Turquoisenona profile image
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Hi...I am new to this site but am wanting to hear other people's stories and experiences since having a total thyroidectomy. Basically from a few weeks after having the operation I started putting on weight. I have never really felt myself since removal. I can feel very down at times. Lately I have a lot of joint pain. My cholesterol levels are rising and my HBa1c levels are close to being in the pre diabetic range. I definitely feel that my health has deteriorated since the operation. I am keen to speak to a private doctor about my levels etc as with the NHS if your TSH is within range, as mine is, they don't seem to care. Has anyone gone private and been given T3 medication or anything else which has made a difference? I would give anything to feel like the old me again....

Recent test results are

TSH 2 .97 (0.270 -4.2)

Free T3 4.1 (3.1-6.8)

FT4 21.6 (12-22)

T4 121 ( 59 -154)

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Turquoisenona
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Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey. Click on your image icon to start.

Could you add the reference ranges for each test - numbers in brackets after your result. They vary from lab to lab so are important.

What time of day was this test taken?

When did you last taken your Levo before this test?

Your TSH is too high. Most people feel well when their TSH is at or just under 1.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

As thyroid patients we do need to become our own health advocates with GP’s and Endocrinologists. They get little training in how to make us feel well, instead relying on lab numbers on paper. Take some time to read up on your condition, learn and get your confidence up. This will stand you in good stead when discussing your condition and challenging things that medic say. Take printed medical papers with you evidencing what you are asking for, and also take someone along with you if you feel it would help.

Turquoisenona profile image
Turquoisenona in reply to Jaydee1507

Thank you for all that information. I certainly didn't know about it mattering about time of day for bloods etc

Turquoisenona profile image
Turquoisenona in reply to Turquoisenona

My Ferritin is 65 (13-150)B12 is 412 (300-569)

Vit D is 89 (75-175)

Jaydee1507 profile image
Jaydee1507Administrator in reply to Turquoisenona

Your vitamins are actually not too bad although your ferritin could be higher. Optimal for ferritin is 90-100 for best use of thyroid hormones so I suggest adding in some more iron rich foods to your diet a few times a week such as chicken livers or pate, red meat etc.

No folate result.

B12 would be better at over 500. Recommend taking an active/methyl (should say on label) B complex which contains 400mcgs folate (also B12). This B complex has all the right vitamins at a not unreasonable cost for 90 days supply. amazon.co.uk/Liposomal-Soft...

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...

Getting vitamin levels right is really important to make our thyroid hormone work well.

You may not need to go privately to sort this out and feel better. I'm not sure when your latest bloods were but perhaps ask for a retest and do that by the protocol mentioned. Then you can go armed with information about getting your TSH lower and ask for a dose increase.

As thyroid patients we do need to become our own health advocates with GP’s and Endocrinologists. They get little training in how to make us feel well, instead relying on lab numbers on paper. Take some time to read up on your condition, learn and get your confidence up. This will stand you in good stead when discussing your condition and challenging things that medic say. Take printed medical papers with you evidencing what you are asking for, and also take someone along with you if you feel it would help.

Turquoisenona profile image
Turquoisenona in reply to Jaydee1507

Thank you very much. Have just ordered the vits.

Turquoisenona profile image
Turquoisenona

My blood test was first thing in the morning but after my dose of Levothyroxine

tattybogle profile image
tattybogle in reply to Turquoisenona

Hi Turqouisenona,

So because your TSH is still 2.97 this shows that your body would like a higher dose of thyroid hormone . ( TSH is most commonly around 1 in healthy people)

If GP see's the fT4 level on that test, they will likely say no to an increase in dose , because the fT4 is so high in range ..... but if you had tested correctly (before taking that days dose of Levo, leaving a 24 hr gap from last dose) then your fT4 result would have probably have been a bit lower.

if a dose increase is refused, ask for a retest, and do the next one correctly (to avoid the high 'peak' in fT4 levels which happens for only a few hrs after taking the dose) ~ you want to be measuring the levels you have for most of the day , not the high peak shortly after taking the tablet .

if fT4 is still that high when tested correctly, then you will need to look at other options eg seeing if optimising vitamins will help , or failing that , asking for referral to endo for trial of slightly less levo with some T3 added. But try the correct test /levo increase route first, if that works it's much easier that getting your hands on T3.

This post gives several authoritative references recommending GP's keep TSH between 0.4/0.5 and 2/2.5 in patients on levo, including one written for GP's by Specialist Registrars in Cardiology and Endocrinology: healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range

The first couple of replies to that post are references showing why testing in early AM BEFORE taking that days dose is best practice .. and also for why it is best not to have breakfast before the test (having breakfast can lower TSH level a bit)

This post explains why TSH over about 2 can still mean you need more thyroid Hormone even though it is 'in range' : healthunlocked.com/thyroidu... explanation-of-what *high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy *high =over 2.5/3-ish

This post has a graph showing what happens to fT4 level in the hours after you take the tablet .. there is a short gap (aprox one/ two hours) until the tablet is absorbed... then a high peak between aprox 2-4 hrs following dose .... then it gradually falls until about 12 hrs . By which time it is 'more or less' at it's settled level,.... but because these timing will vary depending on the individuals speed of digestion / absorption , it is most consistent to alway s test after 24hrs: healthunlocked.com/thyroidu...

Waiting until after the test to take dose does not affect the TSH level, just the fT4 level .

TSH level is affected by:

the time of day (higher early a.m , falling to lowest around 1-3pm ,then slowly rising again ).

and by having breakfast . (in some people, TSH may a be up to 30 % lower after breakfast) , so ideally you want to do all your thyroid blood tests early am , and take that days levo after the test .

Turquoisenona profile image
Turquoisenona in reply to tattybogle

Thank you for all of that information. I just remembered that my latest test was a private Thriva one and I would have followed whatever protocol they said to do before collecting the blood. I can't remember if they said to collect before thyroid meds or not to be honest. I have a doctor's blood test coming up though so will be sure to follow guidelines.

Jaydee1507 profile image
Jaydee1507Administrator in reply to Turquoisenona

Of course previously to arriving here you would likely not have been given any information about timing of blood tests. The information I gave you about how and when to do a blood test is a patient to patient tip, and doctors will likely never have heard of it. This is why patient goups exist though, as there are so many nuances in the treatment of this condition that can make a huge difference to your treatment and how you feel.

The important thing is now though you have found this group that can help you feel well and put into place some minor adjustments that can make a real difference to you.

Turquoisenona profile image
Turquoisenona in reply to Jaydee1507

Thank you. It is a very encouraging group.

Alex_p profile image
Alex_p

Just answering to let you know you’re not alone. I had my thyrodectomy 4.5 years ago and never felt the same since. The first couple of years were ok, but after that I started to get all the symptoms from being hypo, which is why I started to look for help that I didn’t find with the NHS endo, but found it with the good people that are on this forum - without the help I got here I would still be losing my will to live. What I was told when I got the thyrodectomy is that I needed to keep my TSH supressed for 5 years, because in my case it was cancer and we did not want it to return; I’m not sure if it was cancer for you, but might be something you should talk to your endo about.

Turquoisenona profile image
Turquoisenona in reply to Alex_p

Thank you. I have Grave's disease. First diagnosed when I was around 30. It sorted itself out after around 3/4 months of meds and I went into remission. It would then, unfortunately, flare up every 3 years or so and I would repeat the 3/4 months of meds until I decided to go for the definitive treatment in 2020. I feel quite angry and sad at times that I had the total thyroidectomy as life after it just hasn't been the same.

SlowDragon profile image
SlowDragonAdministrator

which brand of levothyroxine are you taking

How much levothyroxine

Your high TSH shows you need dose increase

Book early morning blood test at GP’s …ideally just before 9am and don’t take levothyroxine until after blood test.

No folate result

Request GP test folate, B12 and ferritin

What vitamin supplements are you currently taking

Turquoisenona profile image
Turquoisenona in reply to SlowDragon

Hi...I am on 'accord' Levothyroxine at 100mcg daily.

I have recently seen an alternative practitioner who has me taking a whole load of stuff based on the results of private tests she encouraged me to have. Adreset, Menopeace, Maca, Berberine and digestive enzymes. I am not taking any vitamin supplements as such. It was good to get the test results etc but I do feel that most of my symptoms stem from thyroid levels not being optimum and that I might be better spending my money on seeing a private endocrinologist? Any advice on vitamins to take greatly appreciated.

My last period was hideous (1st one after having my Mirena coil removed last month) to the point I nearly took myself to A and E over the blood loss. I think this may also be connected although obviously at age 49 I am also peri menopausal.

SlowDragon profile image
SlowDragonAdministrator in reply to Turquoisenona

Any supplements must be at least 2 hours away from taking levothyroxine

Adrenals try to compensate for lack of thyroid hormones when under medicated

Did you do an adrenal test before starting Adreset

regeneruslabs.com/products/...

portal-app.inspira-regeneru...

Get vitamin D, folate, ferritin and B12 tested

If you suspect anaemia (likely if very heavy periods) get full iron panel test too

Test early morning and only water before test

medichecks.com/products/iro...

Turquoisenona profile image
Turquoisenona in reply to SlowDragon

Yes adrenal test was done. As was B12, Vit D and ferritin which were all okay. I don't think they tested Folate. I hadn't had a period in 2 years prior (Merina Coil was suppressing them)to this one so might get away with it but completely agree if this happens monthly I will soon be deficient.

SlowDragon profile image
SlowDragonAdministrator in reply to Turquoisenona

what were actual results and ranges for vitamin D, ferritin and B12

Accord don’t make 25mcg tablets

Suggest you request 50mcg tablets on prescription and cut in half to get 25mcg

Turquoisenona profile image
Turquoisenona in reply to SlowDragon

My Ferritin is 65 (13-150)B12 is 412 (300-569)

Vit D is 89 (75-175)

SlowDragon profile image
SlowDragonAdministrator in reply to Turquoisenona

Ferritin may be better nearer 100

Look at increasing iron rich foods in your diet

Vitamin D may be better 100-125nmol

How much vitamin D are you currently taking

Are you supplementing any magnesium or vitamin K2

B12 may be better at least over 500

Ideally test folate before adding a separate daily B12 and a week later adding a daily vitamin B complex

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week 

B12 drops 

natureprovides.com/products...

Or

B12 sublingual lozenges 

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay 

Other options 

healthunlocked.com/thyroidu....

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12

Graves disease is autoimmune

You may find it beneficial to be on strictly gluten free diet

Get coeliac blood test before trialing strictly gluten free diet

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

Only make one change or add one vitamin supplement at a time. Otherwise you can’t tell what’s helping

littlecandle profile image
littlecandle

I had a total thyroidectomy 27 years ago. I never feel completely 100%, but my biggest issues are tiredness and feeling the cold badly. As others have said, you need to become your own advocate, because the endocrinologists know nothing. After many years, my GP has finally added to my notes that I feel best with a high T4 and suppressed TSH. This forum has very knowledgable people on it and is a great support.

Turquoisenona profile image
Turquoisenona in reply to littlecandle

Thank you

Brightness14 profile image
Brightness14

You asked for answers from people with no thyroid I am one of those. I never felt well on Levo 100mcg and after 8 months joined this site after my thyroidectomy in 2015.I looked for answers. I then self medicated NDT which I sourced myself and for over 7 seven years was well. I am now on a different NDT called Armour. I have a private blood test once a year for extras that the GP never orders. I have been looking at the dosage of Tyrofix which my friend takes too she has no thyroid. On the dosage instruction it clearly states that patients without a thyroid should be taking 150mcg minimum to feel well. I was never on the correct dose of Levo that's maybe I never felt well.

Turquoisenona profile image
Turquoisenona in reply to Brightness14

Thank you! It is really good to talk to people in the same boat. I am definitely at the point of wanting to try alternative meds. How did you work out what dosage to go for with the NDT? I would rather have a medical professional guide me through it and find it all very frustrating but will go ahead as you have if I need to.

SlowDragon profile image
SlowDragonAdministrator in reply to Turquoisenona

Before considering adding T3 or trying NDT

You need increase in levothyroxine

Retest 6-8 weeks after any dose or brand change

Test correctly…early morning and last dose 24 hours before test

Essential to get all four vitamins tested and optimal too

We need optimal vitamins for good conversion of Ft4 to Ft3

Meanwhile here’s lists of Specialist thyroid doctors and endocrinologists - many will prescribe T3. Some may prescribe NDT

healthunlocked.com/thyroidu...

Brightness14 profile image
Brightness14 in reply to Turquoisenona

I think that you took your Levo before the blood test which would alter the results.

Before you think about NDT you may consider adding a little T3 to your Levo as many do on here. Maybe your Levo dose is too low. Some very helpful info from Slow Dragon.

Turquoisenona profile image
Turquoisenona in reply to Brightness14

Is it easy to get doctors to prescribe T3 or will I need to source that myself?

Brightness14 profile image
Brightness14 in reply to Turquoisenona

You would have to do a separate post asking for this. Many people on the site will be able to answer you. I live in France so it's different here and easy to get from the GP's.

Sam3tu profile image
Sam3tu

Having a total thyroidectomy destroyed my life. You're not alone. The first thing I noticed is that I was getting insomnia and unrefreshed sleep. heart palpitations, fatigue, brain fog, low mood etc.

initially i was on t4( levo) monotherapy and was still showing hypo symptoms.

adding t3 helped a little but worsened the palpitations. its so hard getting the dose right without getting side effects.

i think endocrinologists need to take thyroidectomies more seriously!!!

Turquoisenona profile image
Turquoisenona in reply to Sam3tu

It's horrible. I can feel my health spiraling downhill and 'specialists' saying things like "you can't blame your thyroid forever" when replying to my dismay of weight gain doesn't help things. I have been of a slim athletic build my whole life and eat sensibly so absolutely know that putting weight on literally weeks after the opp was to do with the lack of thyroid/incorrect dosage. I find the lack of proper aftercare disgusting. It is fantastic to read other people's stories though and it gives me hope that one day I might feel even 50 percent of who I was.

Sam3tu profile image
Sam3tu in reply to Turquoisenona

I know exactly how you feel, you're feelings are valid and it's not in your head.

I've lost my identity and my health is deteriorating too. I'm onto my third endo because I just need answers. I pray God helps us all through this healing journey.

Turquoisenona profile image
Turquoisenona in reply to Sam3tu

Sorry to hear you are going through the same stuff. It is so frustrating.

Brightness14 profile image
Brightness14 in reply to Turquoisenona

When I visited my first endo after my Thyroidectomy and I asked about Vitamin D, well she didn't even know what it was and had to use her computer to look it up. This was in 2015 not the dark ages. I then decided to treat myself and have been very well for over seven years. The only time I have ever put on weight was after the op and on Levo for only 8 months I gained 10/12 lbs. Since then I am back to my normal slim self.

Turquoisenona profile image
Turquoisenona in reply to Brightness14

That's crazy re the vitamin D! Do the NHS prescribe your T3?

Milkyway88 profile image
Milkyway88

Another advocate for hanging onto your thyroid (lost mine 23 years ago through RAI), and wish I’d stuck to my initial decision of saying ‘no’.

Turquoisenona profile image
Turquoisenona in reply to Milkyway88

It's a horrible situation to be in

Hello there, I had a thyroidectomy due to graves disease last June.I am just taking thyroxine.I agree that I have up and down days but I still feel better than I did before my operation and don't regret it.I have found so much help and information on the forum about my condition and that has been invaluable.It is so important to take charge and keep on top of everything even if it is overwhelming at times.I have kept my profile up to date if you care to read it.You just click on the picture at the side of my name and there it is.In my head I gave myself at least a year to get over the operation and allow my body to settle down.Luckily I seem to tolerate levothyroxine well but at the moment I am having a dose adjustment.I have tried to improve other areas of my life to compensate having no thyroid by trying to eat well, look at vitamin levels, keep active but not overdoing things and pacing myself.You are in the right place to get yourself back on track.There are lots of things to try because we are all different and I send you my best wishes.

Turquoisenona profile image
Turquoisenona in reply to Cavapoochonowner

Thank you. If my Grave's disease had been constant I would agree with you about being pleased I had had the op but as it only effected me for 3/4 months every 3 years or so, at the moment I wish I hadn't had it taken out. I am really pleased to have found this group though and am excited to make changes and fingers crossed improve my health. It's nice to not feel so alone with it all.

Brightness14 profile image
Brightness14 in reply to Turquoisenona

My mother's older sister was only in her thirties when she died. She suffered badly from Graves disease. It's better now this was 1931. You can get better it just takes time.

It's hard but with the help on this forum and the admin who are so knowledgeable you will feel well again.

Cavapoochonowner profile image
Cavapoochonowner in reply to Turquoisenona

Yes, it's the learning through other people who have experienced it themselves and the"not feeling you are the only one" which I have found invaluable.

Batty1 profile image
Batty1

Its not uncommon for a person to gain 20 pounds after thyroidectomy but once your medication is optimized it should get better “I heard this a million times” such liars and I wished I only gained 20 pounds my weight went crazy (menopause) and then thyroidectomy is the kiss of death in the weight department…. It sounds like your Endo won’t up medication so you might have to resort to self medicating… What issues are you experiencing?

Turquoisenona profile image
Turquoisenona in reply to Batty1

Hi...lack of energy, weight gain, feeling sad a lot, very dry skin on heels of feet with deep cracks, just not feeling myself really.

SilverAvocado profile image
SilverAvocado

Hi Turqoisenona,

I'm another thyroidectomy patient. I think I am one of the unlucky ones as I have been mostly in bed since my operation and RAI ten years ago. I now completely self medicate and am much more comfortable and able than I was on Levothyroxine. My story very briefly, I was initially prescribed Levo and T3, started self medicating with NDT, and have recently changed my approach to mainly T3 with a small amount of NDT, as I suspect the T4 (ingredient of Levo) was disagreeing with me. But when I first sampled NDT it felt like a light being switched on, completely different from synthetics, so I am reluctant to go off it all together.

TSH 2 .97 (0.270 -4.2)

FT4 21.6 (12-22)

Free T3 4.1 (3.1-6.8)

To explain your results, TSH stands for Thyroid Stimulating Hormone. It is a chemical messenger made in the brain to stimulate the thyroid to make more hormone. The higher it is, the more your body is calling for more hormone. The reference range for this is very misleading. A person with a healthy thyroid would have this number at around 1, and once it got to around 2.5 it would start to indicate something badly wrong. Thyroid hormone replacement tends to be better at pushing this number low than our own body produced hormone, so most people taking replacement will need a number below 1 to feel well. We often need it to be suppressed, or below the bottom of the range altogether.

Your TSH is currently far too high and indicates you are badly under medicated. In some ways this can be a good thing to find out, as it is an explanation for your symptoms. It may be that all you need is a dose increase and you'll feel completely better. Your symptoms will almost certainly reduce a lot once you get the increase you need.

FreeT4 is a measure of the T4 available in your blood. Levothyroxine contains only T4, otherwise called thyroxine. It is the main hormone produced by the thyroid. Because you are only taking Levo, and Levo only contains T4, this test gives a good indication of how much your medication is raising your levels.

For both freeT4 and freeT3, a person with a healthy thyroid would be around the middle of the range. When taking T4-only, most people will need this number high in the range, or even a tiny bit over. Your number is pretty high in the range, but does give a tiny bit of wiggle room for an increase. I see from the comments you possible took your Levo shortly before taking your blood sample? If that is the case your T4 levels will be extra high for maybe three plus hours after taking it, so you can expect your true number to be quite a bit lower. Do you have any older tests that might be more representative? Anyway, even if this was your true result you could try an increase. Best practice is to increase 25mcg, and then wait six weeks to have a new thyroid panel blood tests.

T4 is only the storage form of thyroid hormone. Before your body can use it, it needs to convert it into T3, the active hormone that is needed by every cell and tissue in the body. Really the only reason we take T4 is to give us a good T3 level, measured by freeT3.

As above, a person with a healthy thyroid would have a freeT3 around the middle of the range. Most people on hormone replacement need it high to feel well, in the top third or all the way to the top of the range. Your body has to accomplish an active process to convert T4 into T3, when we're ill our bodies are often not great at this, but your doctor assumes everyone is doing it perfectly. When you are taking T4-only we can look at this number to see how good your body is at the conversion.

Your freeT3 is very low, about a quarter of the way up the range. Which is going to be too low for anyone, and explains why you've got a raised TSH, and why you have symptoms. Proportionally your freeT3 is much lower in range than your freeT4. If this was a test taken under ideal conditions, this would suggest poor conversion, which is the clear sign of needing to take T3. But as we don't know what you're freeT4 really is it may be that that it is similarly low in range (freeT3 will always lag behind freeT4 a bit).

For the question of where to turn next:

It is clear you need a dose increase of Levo, and I think that is the best next step. I always advocate for completely exhausting the options with Levo before moving on. And similarly with self medication, there are a lot of benefits to staying within the official system if you can.

In the long run, you will probably want to try some T3 or NDT as you have no thyroid. The thyroid is actually a pretty complex organ that produces more than just simply T4, and probably has regulatory functions, too, so when we have it completely removed Levo probably won't be enough.

If you do turn out to have a clear conversion problem demonstrated by blood tests you may be able to use it to lobby doctors for prescribed T3. It is nearly always a long fight and also a postcode lottery as many regions say definitely no. This kind of thing is discussed a lot on the forum, so you may be able to find others stories and good advice.

Another interesting short term option I thought of, seeing you have a nathropath, you may find it simple to start on thyroid glandulars, and may find they can source them and advise you. These are products sold as food /supplements rather than medicine, so can be bought over the counter. They actually contain dessicated thyroid, so are effectively NDT. They are serious hormone so need to be dosed just as carefully as medicines. One brand is Metavive, Dr. Lowe's estate also produces a product I think called Thyro Gold. These are discussed occasionally on the forum so you can use the search function to find out more. I am quite out of the loop at the moment, so it may be these brands are less available, or others more available. If you try this I would use alongside the prescribed Levo, (reducing the Levo dose as you add the glandular) and not mention it to your doctor. Just play it off as if they were a multi vitamin or something.

My other general advice is to read the forum every day, for at least a few months. Read the interpretation of other people's blood tests until you are confident in interpreting them yourself, advice for how to adjust doses, pick up recommended books and articles, etc . This will put you in a good position if you do need to self medicate. I think it is one of the best educations you can get. If you do need to self medicate, I think it is very important to go into it with a clear method, being cautious and methodical.

Turquoisenona profile image
Turquoisenona in reply to SilverAvocado

Thank you so much for taking the time to reply in such depth. I actually have tears as I type as have felt so alone with all of this.

SilverAvocado profile image
SilverAvocado in reply to Turquoisenona

You're very welcome and I'm glad I could be of help. I know exactly what you mean about feeling so alone. It is completely dehumanising how we are treated by doctors.

pennyannie profile image
pennyannie

Hello Turquoisenona and welcome to the forum :

You have had a lot of comments and support and probably in information overload.

Can I just add :-

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.,

T3 is the active hormone that runs the body and said to be around 4 times more powerful than T4.

T4 - is basically inert, and a prohormone which is converted by the body into T3 as and when needed throughout a 24 hour cycle -

and it is too low a level of T3 for you that causes the symptoms of hypothyroidism -

just as too high a level of T3 for you would cause symptoms of hyperthyroidism -

IF you still had a thyroid.

Having ' lost ' your thyroid - your HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop on which the TSH relies on working is now broken.

Your thyroid not there, and the body's own natural feedback loop is now not a complete circuit loop so it is essential that you are dosed and monitored on your Free T3 and Free T4 readings and ranges and not a TSH, especially when seen in isolation, which is all you generally get in primary care.

Once on T4 - Levothyroxine - we generally feel at our best when our T4 is in the top quadrant of its range as this should convert to a decent level of T3 at around a 1/4 ratio T3/T4.

The accepted conversion ratio when on T4 monotherapy is said to be 1 - 3.50-4.50 - T3/T4 and we generally feel at our best when we come in this ratio at 4 or under.

So to find how well you are converting the T4 into T3 you simply divide your T4 by your T3 and I'm getting yours coming in at 5.27 showing very poor conversion and guessing you are very unwell - mine as out at 5,50 - and that's wasn't much fun at all.

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

No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal levels.

Some people can get by on T4 - Levothyroxine only :

Some people find that after a while T4 doesn't seem to work as well as it once did and find that by adding a little T3 - Liothyronine - probably to replace that ' little bit lost ' when the thyroid was lost - T3 and T4 are synthetically rebalanced and they feel their health and well being restored.

Some people can't tolerate T4 and need to take T3 only.

Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids dried and ground down into tablets referred to as grains.

Currently you primary care doctor can only prescribe T4 and to be considered as needing any other option you need to be assessed by an NHS endocrinologist and it is a post code lottery and very much down to local ICB/CCG restrictions on finances rather than a patient's medical need.

Thyroid UK hold a patient to patient recommended list of sympathetic NHS/private endos and I'm sure someone has already given you this information.

I have Graves Disease and had RAI thyroid ablation back in 2005 becoming very unwell around 8 years later. ncbi.nlm.nih.gov/pubmed/306... -

and quite why it is still offered as an option and is some cases like myself, the first and only treatment option even when well on the AT drug - is beyond me. pubmed.ncbi.nlm.nih.gov/pub...

I couldn't afford to go private and fighting the NHS for any help with my systems simply exacerbated my health issues further so I did a U turn and started self medicating in 2018 and settled on NDT around 5 years ago and i am much improved and have back my life, as good as it gets.

As for the Graves Disease - there is no cure - it's an auto immune disease and likely triggered by stress and anxiety but now yo haven't a thyroid your symptoms will not be seem as life threatening and in all honesty I found no one as interested in the Graves as they thought it cured.

The most well rounded of all the research I found for Graves Disease is that of Elaine Moore and her Graves and Auto immune Education Foundation full of interesting sections on what and how we can do to help ourselves for this poorly understood and badly treated auto Immune disease by mainstream medical.

To reread your post another day, as I'm sure you can't take in all these comments same day, everything that you have written and everything everybody has replied can be found on your profile page.

You can read everybody else's profile page by pressing on the icon alongside their name on any replies they have written.

Hope that all makes some sense - this is very late in the day for me and i need a catnap - but thought I should send you a hug and support first.

Turquoisenona profile image
Turquoisenona in reply to pennyannie

Thank you very much for this. It is clear from all the lovely people replying that my levels need work and explains why I have felt so rubbish, even if the doctors seem very happy with them! I have a blood test next week (not just TSH) so will go from there. Thanks again.

pennyannie profile image
pennyannie in reply to Turquoisenona

I've now just finished that reply to you - so I'm afraid there is more to read when you relook at it - I stopped half way through as someone came to the door and I didn't want to loose where i was up to.

TSH110 profile image
TSH110

hi I agree that you desperately need a dose increase.

I have atropic autoimmune thyroiditis something like Graves at first that becomes hypothyroidism eventually, and effectively my thyroid has completely died .

My endocrinologist who was a decent one aimed for

TSH 0.2 - 0.5

Free t3 and free t4 in the upper third of their ranges (ditto T3 and T4)

So it’s obvious you are miles off those optimisation targets and that’s why you dont feel good.

Ask thyroid U.K. admin for a copy of the article in Pulse qn 6 where Anthony Toft an eminent endocrinologist states these figures and you can highlight them and take a copy to your Gp as evidence to support a dose increase until these values are achieved. He was surgeon to the queen when she was in Scotland should his credentials be questioned so I’d say what was good enough for her maj is good enough for you!

Even though I had the TSH in that parameter the t 3 remained low (my relatives had no such problems on Levothyroxine) so I ended up self medicating on NDT and the T3 in it put me back to rights in fact my depression disappeared altogether so in some ways I felt better than I had done for decades.

I hope you get a dose increase soon and reach optimisation and good health as you are titrate up to something more reasonable. You need a lower TSH than those with a thyroid who are healthy to make up extra T3 from conversion that the thyroid once made itself as well as converting the t4 to T3 it made

Turquoisenona profile image
Turquoisenona in reply to TSH110

Thanks for that. I will try and print off that article to take with me. It's all making me realise just how many people are probably suffering with their wellbeing and health after TT or having thyroid issues. The doctors need to get a better understanding of it all as weight gain, high cholesterol etc will only cost the NHS further down the line.

TSH110 profile image
TSH110

I’d use a highlighter pen just for that bit to show the GP so it’s very short and sweet. If asked say you found out about it throughThyroid U.K. who are recommended by NHS choices.

Pulse is a doctors publication

Good luck ☘️🍀☘️

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