TT and weight gain! : I am at the end of my... - Thyroid UK

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TT and weight gain!

Ajhawkes214 profile image
22 Replies

I am at the end of my tether, to the point it is depressing me. I recently had my dose of Levo 125mg increased to 150mg after complaining to my GP that I had gained excessive weight and was tired all the time. I have been taking the 150mg for the last 4 weeks and it’s not made much of a change. I am still struggling with my weight. I have even taken to taking T6 weight loss tablets. After seeing a local girl having fantastic results from them. I have taken them for 2 weeks, with a healthy diet and still nothing. I feel like crying all the time. I barely have any energy because of my weight. I am struggling to cope. I am only 32. Surely someone on this forum has had similar issues to myself following a TT and weight gain and has successfully lost the weight they had put on? Please, I am in desperate need of advice 😞

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22 Replies
AnnaSo profile image
AnnaSo

Hi Ajhawkes!

I sympathise, I myself also suffered with weight gain when my medication was lowered- I nearly had any thyroid hormones available so no wonder. Do you have your recent lab results on you? That would be the place to start. Also do you take any supplements?

Ajhawkes214 profile image
Ajhawkes214 in reply toAnnaSo

Hi Anna. Thankyou for your reply. Yes I do have test results from 4 weeks ago. That was before my thyroxine was increased to 150mg.

My serum TSH level was 22.24 miu/L abnormal

Serum free T4 level was 12.8 pmol/L normal

I was taking weight loss supplements T6 and another supplement to help my bloating.

AnnaSo profile image
AnnaSo in reply toAjhawkes214

TSH 22?! Oh. My. God. Are you sure it’s not a typo? If not, no wonder you are gaining weight. I put on a stone in a flash when my TSH went up to 3! You definitely need to lower that to 1 or below but slowly of course. Did they test T3 at all? When was your last dowse and when was the test taken?

I’ve never heard of T6. What is it? What is the bloating supplement? And have you been taking these together with your Levo?

Ajhawkes214 profile image
Ajhawkes214 in reply toAnnaSo

No it’s definitely not a typo error. I have the results on my patient access app on my phone. The surgery phoned me to tell me the doctor has requested me to book in and see him in 6 weeks time because he thinks I have an Under active thyroid!! I told the receptionist that he needed to check my medical history as I don’t even have a thyroid!! T6’s is a fat burner and increases your metabolism. The other supplement I have been taking is a natural tablet called inulin complex which reduces bloating massively.

I have been taking my Levo very early in the morning as soon as I wake up- as advised in previous posts. And then I take the T6 around 10am. And then 2 inulin tablets just before bed with a pint of water. The T6 suppress your appetite. Which to be honest leave you with little to no desire to snack or crave.

SazzaCat profile image
SazzaCat

I hear you sister. My dose has just been increased to 100mg a day. I am three months into treatment but have been having symptoms for over 15 years! I would like some hope too (and please don't recommend Slimming World - I do not think sweeteners or dieting is good for me as I did not lose anything over two years with them). Even my hands have fat rolls and I would like some hope too :( xxx

Ajhawkes214 profile image
Ajhawkes214 in reply toSazzaCat

I have been recommended slimming world. But also seen posts that calorie counting doesn’t work with people who have thyroid problems. I hope you can find a solution on my post too. My tummy is so swollen my 6 year old keeps asking if I am pregnant 🤦🏼‍♀️ My arms have gone big, my neck is starting to swell and my face is all puffy. At the time having a TT I thought it was the answer to my problems- how wrong was I?! It’s just created even more 😞 xxx

SazzaCat profile image
SazzaCat in reply toAjhawkes214

Same - pregnant belly and puffy face. My arms have always been big. I have had low iron and vitamin D deficiency before and a panicked doctor ringing me straight after a blood test asking me to take a LOT of iron for three months previously (a couple of years ago) as I was dangerously anaemic. I am only having my TSH and my cholesterol level tested now (a private health check showed a score of 8.2 cholesterol so I asked for that to be tested during my TSH blood test). I was having my liver and kidney function tested but that has stopped too. Good luck xxx

SeasideSusie profile image
SeasideSusieRemembering

Ajhawkes214

I think you should ditch the weight loss tablets. There seems to be different T6 tablets, what are the ingredients of yours?

What is the other supplement you are taking for the bloating?

4 weeks ago:

serum TSH level 22.24 miu/L abnormal

Serum free T4 level was 12.8 pmol/L normal

We need reference ranges for results to be able to interpret them, especially Free T4. We know that TSH is way over range, the aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well. But where in range is your FT4? My surgery's range is 7-17 so you would be half way through with that, but we also see 9-19 and you would be low with that, and we also see 12-22 and you would have barely scraped into range with that.

Your increase in Levo dose will help reduce TSH and should increase FT4, but you need retesting 6 weeks after the increase to see how things are and another increase of 25mcg if your levels aren't where they need to be for you to feel well.

Also, TSH and FT4 is not the whole picture. You need FT3 as well but doctors don't seem to understand this. T4 is inactive, a pro-hormone of which some converts to T3, and it's T3 that is the active hormone that every cell in our bodies need. Low T3 gives us symptoms and prevents weight loss. So you absolutely need FT3 testing and I expect it is low.

If GP can't get TSH, FT4 and FT3 all tested at the same time then I suggest you do a private test with Medichecks or Blue Horizon. Either just those 3 tests, or do one of their bundles that also includes vitamins and minerals to get a full picture, nutrient levels need to be optimal for thyroid hormone to work so it's always worth checking them and address any low levels or deficiencies. If GP can't or wont do vitamins and minerals either then I suggest you do one of the following

Blue Horizon Thyroid Plus Eleven - bluehorizonmedicals.co.uk/t... and using code AUGUST20 should give 20% off until the end of this month.

Medichecks Thyroid Check UltraVit - medichecks.com/thyroid-func...

Ajhawkes214 profile image
Ajhawkes214

Hi. The range for my TSH level is (0.30-5.00)

Free T4 (11.0-22.0)

I specifically asked to have my T3 tested and he told me no. I fasted 24 hours prior to my blood tests as advised on the forum.

I was taking inulin- a natural tablet for my bloating.

SeasideSusie profile image
SeasideSusieRemembering in reply toAjhawkes214

Ajhawkes214

Nobody on the forum advises fasting for 24 hours before a thyroid test.

When on Levo, it is advised to leave 24 hours between last dose of Levo and blood draw (if taking NDT or T3 then last dose of that should be 12 hours before blood draw).

As eating can lower TSH, it is suggested that we fast overnight and drink water only - as in have your evening meal as normal but next day delay breakfast until after the blood draw, and have blood drawn as eary as possible (no later than 9am) as that's when TSH is highest.

Inulin seems to be classed as a form of dietary fibre. Do you take it well away from your thyroid meds?

So your FT4 was very low in range, which is to be expected with such a high TSH. You need to see what your new results are like when you are retested, remember to arrange this for 6 weeks after your dose increase. And if you can't get FT3 tested through your GP (and it's generally the lab who makes that decision even when a GP requests it) then I would say it's essential that you do a private test and FT3 and FT4 need to be tested at the same time. As already mentioned, if you can't get your vitamins and minerals tested with your GP, it would be a good idea to get them tested at the same time as thyroid test including the FT3, the thyroid/vitamin/mineral bundle is good value.

Ajhawkes214 profile image
Ajhawkes214 in reply toSeasideSusie

Oh my apologies- what you have just outlined to me is exactly what I did. I thought it was called 24 hour fasting 🤷🏼‍♀️ I’m new to all of this. And to be honest. I’m struggling to to understand half the terms that most people use. Reading your responses are like trying to understand a foreign language- in the nicest possible way. As far as I was aware. I had a goitre and I was recommended to have my thyroid totally removed by my specialist. I was given 125mg Levo and I have taken that every single day since my op 4 years ago up until 4 weeks ago when it was increased by 25mg. It’s only been the last 12 months I have been suffering with fatigue, weight gain and hair loss/ thinning. I understand that certain tests will make things a lot more clearer with the results in regards to the problems I am having at the moment. I am just struggling to understand them all. I’ve found a lot of people talk the thyroid language quite fluently. I am still learning

SeasideSusie profile image
SeasideSusieRemembering in reply toAjhawkes214

Ajhawkes

For thyroid hormone to work, vitamins and minerals need to be at optimal levels. You really need to get the following tested

Vit D

B12

Folate

Ferritin

Symptoms of low nutrient levels can overlap with symptoms of hypothyroidism. For example, low ferritin can cause fatigue, it can also cause hair loss.

You already know that your last results show that you are woefully undermedicated to have a high TSH and a barely in range FT4. So that will be causing symptoms of hypothyroidism which can include - fatigue, hair loss, and weight gain.

So at this stage what you need is a full thyroid panel to be done 6 weeks after your dose increase to 150mcg Levo:

TSH

FT4

FT3

and those vitamins and minerals listed above.

If you can't get them done by your GP then I suggest you do the Blue Horizon Thyroid Plus Eleven or the Medichecks Thyroid UltraVit mentioned in my previous post. Hundreds of us here have to do our own testing because we can't get them done on the NHS. It's the only way to help ourselves.

Ajhawkes214 profile image
Ajhawkes214 in reply toSeasideSusie

ferritin 15 ug/L normal (10-291)

B12- 246ng/L normal (181-910)

SeasideSusie profile image
SeasideSusieRemembering in reply toAjhawkes214

Ajhawkes

Well there you have a problem.

ferritin 15 ug/L normal (10-291)

That is dire. Even though it's in range it's low enough to suggest you may have iron deficiency anaemia. You should ask your GP to do an iron panel and full blood count. Ferritin needs to be at least 70 for thyroid hormone to work, recommended is half way through it's range.

B12- 246ng/L normal (181-910)

This is rather low. Do you have any signs of B12 deficiency - check here b12deficiency.info/signs-an... - if so then list any and take to your GP. You may need testing for B12 deficiency/Pernicious anaemia, you may need B12 injections. Many people with B12 in the 300s originally have B12 injections.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

And an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

As B12 and Folate work together, it's essential to have Folate tested. Vit D is important too.

Ajhawkes214 profile image
Ajhawkes214 in reply toSeasideSusie

Thankyou for that information. So in conclusion to my original post. Which tests need improving in order for me to start to lose my weight gain?

SeasideSusie profile image
SeasideSusieRemembering in reply toAjhawkes214

Ajhawkes

These are the optimal levels you need

Vit D - 100-150nmol/L

B12 - top of range

Folate - at least half way through range

Ferritin - half way through range

Those are the building blocks for thyroid hormone to work.

Plus, it is essential that you get FT3 tested at the same time as FT4, you need to know if you convert T4 to T3 well enough. With your current levels of TSH and FT4 you have a long way to go. TSH needs to be down to around 1 before you can see how well you convert, so Levo needs to be increased to achieve that.

It is low T3 that is preventing weight loss but you need to get all your ducks in a row first before weight loss is likely to happen.

posthinking01 profile image
posthinking01

Sorry to be dumb but what is TT ?

Ajhawkes214 profile image
Ajhawkes214 in reply toposthinking01

Total thyroidectomy. The removal of your whole thyroid

posthinking01 profile image
posthinking01 in reply toAjhawkes214

Thanks understand now !

The only time I have ever put on weight was after my TT when I was put on Levo for 7/8 months it also made me ill. I put on 10 lbs in weight but as soon as I switched to NDT the weight came straight off again and I am now still back to my normal weight 3 years on.

Ajhawkes214 profile image
Ajhawkes214 in reply to

Can I just ask how much Levo you were on and what you changed it to? I have thought about coming off levo all together and sourcing NDT but I am scared of being really poorly if I stop taking something I was meant to be on for life x

in reply toAjhawkes214

Yes I had been taking 100 - 150 nothing worked I was in pain and getting fatter.

I had never been on any medication before my operation and didn't know anything about the thyroid at all. Then I joined this site did private blood tests, posted with the ranges and waited for answers. I sourced my own NDT and asked how to start. I started taking 1/2 grain for 10 days then another 1/2 grains keep on until you feel well and your blood test for FT3 will show if you are taking too much.

Don't worry the Levo takes some time to leave the body. I am 72 years old and did

3/4 hr yoga this morning, yesterday took the dogs for a good walk uphill for an hour.

I don't have any gut problems or Hashis though.

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