Stopped taking T4 PLEASE HELP

[zoobie]

I have been taking Levo now for over 20 years and always had symptoms. Begged my doctor for combo meds which I tried for 3 months but didn't feel any different. I cut out T4 altogether and just started taking 20mg of T3 daily. All the irritating symptoms disappeared and I've never felt better (the fibromyalgia went away as well!!!!) - but!! My cholesterol has gone up again to 5.84 (I have arterschlerosis so doctor prescribed Repatha). My TSH has gone up to 6.42 Free T4 down to 7.4, Free T3 is 3.76 and thyroglobulin AK up to 126. I don't understand any of these numbers but am still feeling great. If I don't take or only take half of the T3 I go back to how I was before.

[Marz]

Without the range for the FT3 - it still looks low. Perhaps increasing your dose will improve things.

Cholesterol is not the only thing in the arterial plaque - Homocysteine is also there. Also cholesterol is not the cause of heart issues - it is inflammation.

drmalcolmkendrick.org

How are your levels of B12 - Folate - Ferritin - VitD ? These need to be optimal to improve wellness .... VitD is anti-inflammatory so could well improve things in the arteries.

[zoobie in reply to Marz]

Hi März, I take Vit D and selenium and all the blood tests have been normal and I feel great. Just this last blood test since stopping T4 - is worrying me! My heart specialist isn't worried about the cholesterol level, my good and bad cholesterol levels are fine. My hubby says Im experimenting to much with my thyroid meds - but I'm just trying to get it right. How can I feel so good but have bloods like this?

[Marz in reply to zoobie]

FT4 is always low when taking T3 only. How long have you been on this dose ? T3 looks low in range - even without you posting the range

How much VitD are you taking ? What were the other *normal* results - does that mean they were optimal - or bumping along the bottom !!

[helvella Administrator Thyroid UK]

zoobie,

I wondered whether there was any interaction between Repatha (evolocumab) and thyroid/thyroxine. On PubMed not one single paper includes (evolocumab) AND (thyroid or thyroxine).

Why am I not surprised?

20 micrograms of liothyronine a day is not a high dose. You very likely need more.

[zoobie]

I am so confused! Heart specialist says to keep taking Repatha, my cholesterol was dangerously high before starting it. Does T4 do anything other than converting to T3. I am thinking of going back to combo T4 (100mcg) T3 (20mg) then adding another 10 to 20 mg of T3 throughout the day. How much can we read from our blood tests and does a high TSH mean anything?

[Jazzw in reply to zoobie]

A high TSH means you're not on enough thyroid hormone replacement. High cholesterol is a sign of undertreated hypothyroidism. You need more T3. 20mcg of liothyronine is not enough. That's not a replacement dose.

[zoobie]

Even if I feel good on only 20mcg?

[Marz in reply to zoobie]

They keep lowering cholesterol levels to ensure more and more people are prescribed this drug - making billions and billions for the Drug companies. Please read up on it - and the regular posts on this forum - I also gave you a link above to the Doc who wrote the book - The Great Cholesterol Con. Research was done on people dying in hospital and they were found to have LOW cholesterol. Please ask your Docs to show the research that says women benefit from a statin - there is NONE. Docs are well rewarded for prescribing them. There is not good or bad cholesterol - an urban myth to capture the imagination of the people who do not bother to research. Both HDL and LDL cholesterol are proteins transporting cholesterol in and out of the liver. Cholesterol is a chemical so cannot be BOTH good and bad - think about it for a moment.

We need cholesterol in our bodies as it is involved in the production of most hormones. Also you cannot synthesise VitD without cholesterol - and so people are becoming more and more ill with low VitD. They are adding VitD to the new generation of statins - I wonder why ?

Type Cholesterol into the Search Box here on Health Unlocked and see what appears !!

You will have to weigh up what is best for you -

healthunlocked.com/search/c...

Over 4000 posts about cholesterol here on Thyroid UK in the above link

[zoobie in reply to Marz]

Thanks Marz, my cholesterol was 8.5! After a heart scan which showed hardening of the arteries around my heart and the carotid artery the heart specialist thought I should try Repatha - which is not a statin. Both my mother and father died of heart disease, so I am at risk. I take Vitamin D already. I think I need to find a steady dose of T3 and then get blood tests done again in a few months time. Ive been chopping and changing meds for a few months, trying to find the perfect match

[Rapunzel in reply to zoobie]

Ive been chopping and changing meds for a few months, trying to find the perfect match

Don't do it, Zoobie. You may have missed your sweet spot in the chopping and changing.

thyrophoenix.com/adjusting_... glad you're feeling better but you need to keep a closer eye and also have patience

[zoobie in reply to Rapunzel]

I feel like I've found my sweet spot, my bloods just don't agree!!!

[Marz in reply to zoobie]

zoobie - have you read up on what hardening of the arteries actually is ? Cholesterol may adhere to the lining of the arterial wall in order to act like a Rupert bear Plaster and seal over the inflammation to allow it to heal. Think of a scab on a cut As I said before - RAISED cholesterol is not an issue. We can change our destiny - we do not have to follow our parents - do you know what underlying conditions your parents had ? Did they have thyroid issues ?

I too had raised cholesterol way back before the Hashimotos diagnosis - and have not had it tested since. Have you had your HOMOCYSTEINE tested - a far better marker of heart issues and strokes. Mine was high when I first tested back in 2005 as was the cholesterol - lower the Homocysteine and the cholesterol will be lower too

If your Homocysteine is raised - it is one of the markers for LOW B12 at a cellular level so well worth testing. Low B12 - Iron - Ferritin - Folate are also linked to heart issues. Do the Docs know this ? - no - because they want to push drugs. Drugs you may not need ....

Am sure you did not have time to click onto the link I posted about other cholesterol discussions here on this forum - disappointing

[zoobie in reply to Marz]

Hi Marz, thanks for your reply. My biggest problem is, I move between Denmark, Switzerland and Spain (my husbands job) I get blood tests once or twice a year in Switzerland - The Endo here was only interested in Diabetes!!! (which I don't have) so I stopped going to her. I had all my vitamin levels checked earlier in the year and B12, folate, ferritin and Iron were all good (unless the values are different in Switzerland) I told the heart specialist I thought that the T3 had helped more than the Repatha in lowering my cholesterol - but of course she didn't totally agree, but would keep it in mind. I did click on the link you posted - but there were so many posts I thought I would wait until I have more time next week. (I am packing to leave for Denmark in the morning!!) I will raise my intake of T3, the small amount I have been taking is helping enormously and all my aches and pains have disappeared. I was diagnosed with Fibromyalgia which has disappeared since stopping T4 and taking T3 only.

[Marz in reply to zoobie]

Really did not want you to read all those posts 😊😊 Only wanted to illustrate the magnitude of the problem when Hypo. I once had Fibro diagnosed before Hashimotos. We have to learn from each other 😴

[Ann-Simpson in reply to Marz]

was interested to read that you were diagnosed with fibro - I have been too, and am trying to get the thyroid meds right so that the fibro disappears. could you advice me as to how you have managed to keep the fibro away? I am on a mixture of T4 and T3 - 100mcgs T4 and 25mcgs T3. thank you

[Marz in reply to Ann-Simpson]

Fibro seems to be different for so many. Your Thyroid Meds look good - how are the results ? Do you have Hashimotos ? Vitamins and Minerals need to be optimal - B12 - Folate - Ferritin - VitD.

I am now taking 50mcg T4 and 25mcg of T3 before sleep and 25 mcg T3 on waking.

I live in Crete so the heat is good for me and lots of swimming. If I press any part of my upper arms - tops of shoulders - back of neck - I do have tender spots. I have massages - osteo treatment when needed and I practice yoga. I am never completely pain free due to low back issues and back and hip surgery - Crohns and so on !! B12 injections weekly also help me.

Click onto my name above in Blue and you can take a couple of minutes to read my Bio

[Ann-Simpson in reply to Marz]

thank you for your reply and I will read your blog. I now take 100mcg T4 and 25mcg T3 and the decision now is whether I should go back on the amitrytrptaline (sp) or try to keep off it. But I am also working on all the vitamins etc and getting them up the register. Ann

[Marz in reply to Ann-Simpson]

Am sure you will feel stronger when all your vits and minerals are good .... I would try to avoid any drugs if at all possible

[greygoose]

Forget the cholesterol. It was not 'dangerously high', because there is no danger from cholesterol. It is a very important nutrient, made in the liver. The reason yours is high, is because your T3 is low, so the body cannot process cholesterol normally, and it mounts up in the blood. Which does not cause heart attacks nor strokes.

On the other hand, low cholesterol does increase your risk of heart attack. It will also mean that the adrenals cannot make sex hormones. Which will further unbalance your hormones - and you are already hormonally challenged because of your low T3. You will just be making things worse if you try to lower your cholesterol. You will also lower your vit D.

Whether or not you take T4 (levo) is a bit of an irrelevance at this point. The most important thing is to raise your FT3, to get things back into working order. Once you have raised your T3, then you can afford the time to think about T4 - i.e. do you feel better with or without it? Some people - like me - really do feel better without it. It's not a problem.

So, why are you reluctant to raise your dose of T3? Is it because your doctor won't give you any more? You may feel great at the moment, but I can assure you, it won't last. Once your body gets used to having T3, it will start to tell you that you need more. It's already dropping hints with that high TSH! So, please do consider increasing your dose, slowly but surely, and your TSH will come down, and your cholesterol will come down without the need for nasty drugs - and, believe me, all drugs are nasty, whether they're statins or not!