No thyroid help

Hi, i had my thyroid removed 3 years ago. Since then i have not been myself. No emotions , constantly frustrated at my husband & kids, no sex drive.... ive talked to my doctor many times about it, this last time he said it was depression and tried putting me on meds. I get my tests done every 3 months and he always says they are "good."( Im on levthro 150mg )Next time i go in im having him refer me to an endocrinologist. I cant take feeling like this anymore, i just want to go back to being myself..normal. anyone else feel like this after having your thyriod removed?

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  • I am sure there are many here who feel like you - even with a thyroid. For you it is even more difficult without one ... It would be helpful if you could obtain your latest results for your thyroid - with ranges. Maybe the T4/Levo you are taking is not converting into the ACTIVE hormone T3 which is needed in every cell of your body. Rarely tested by the NHS.

    Are you able to have tests done Privately ? - home testing kits are available from Thyroid UK thyroiduk.org

    You also need good levels of B12 - Ferritin - Folate - VitD to feel well and for your thyroid hormones to work well in your body.

    When everything is OPTIMAL you will feel better and will not need AD's 😊

  • Did you originally have Graves overactivity bcos many people after that simply cannot cope on the levels doctors deem normal...only enlightened endos know this as my husband found

    once you get a copy of your results its easier for us to help you find a solution

    for my husband it was NDT instead of synthetic levothyroxine or t3

  • Hi, I have certainly had times like you describe in the sixteen years since my thyroid was removed. I feel more myself taking natural dessicated thyroid and T3, I could not cope with life on thyroxine alone. This is quite common after thyroidectomy as thyroxine can't replace all the elements produced by your own thyroid. It may be that you could discuss your thyroid replacement with an endocrinologist, you may get help on this site from people who have seen an endocrinologist who they can recommend by a private message to you. As Marz has said sometimes the thyroxine is not converted into the active hormone T3 in the body which can lead to feeling undermedicated. I wish you well.

  • Basically when one gets a small disease not only the person suffering also the people most affectionate land into confusion and collects different opinions. This causes confusion and choas. This leads the person Tobe depression. The same may be with you. When the diognasis is arrived there will be treatment. The same had happened. Hence my suggestion is keep your mind away from about your feelings and invole some activity to trim yourself back.

  • Small disease getting my thyroid removed wrecked my life

  • It's an uphill struggle. I had my thyroid zapped with radio active iodine as the doctors said it would be easy after that. " just pop a pill and that's you sorted"

    How wrong they were. It caused thyroid eye disease, weight gain, joint muscle pain. Just when I think I have got things sorted and I am getting myself well, something else happens. This week I had two bouts of afib which have really knocked me about.

    It is depressing but you just have to keep on researching to find optimal health. Try looking for the good in hubby and kids. Do a gratitude list when things get miserable. At least we have experts on this site who can advice us correctly.

  • Sorry you are struggling. I had mine removed a couple of years ago and I am glad I had it done. Prior to the op I was going downhill with incredible joint pain. I feel mostly pain free now. One thing I have been doing for a while is taking 20,000 IUs of D3 every day along with slug of Vit K. D3 is a hormone. I am a 68 year old male. I probably do not remember what normal is, but I feel OK and I am just so happy about the joint pain. Give the D3 a try. I use LifeExtension's Super K and D3 from Vitacost.

  • Please be careful recommending big doses of vitamin D to other members. It's important for people to have their vitamin d tested before starting supplementation to find the right dose (some people might need as little as 1000 per day, while 20000 per day is a gigantic dose and shouldn't be taken for more than 2 weeks by most people as it is a loading dose). There is a danger of vitamin d toxicity, please make sure to get your vitamin d tested and not just guess the correct dosage.

  • I suppose. I think if you feel like sh*t that trying something new is worth a shot. The Vit K is what keeps D3 from causing problems. Getting tested may be helpful, but recommended levels are low. We are all different. Last summer I backed off because I was getting a good bit of sun and my joint pain started coming back.

  • Vitamin d has a toxic point. You don't want to guess with the dosage trust me!

    Please look at this line from the vitamin d council (https://www.vitamindcouncil.org/about-vitamin-d/am-i-getting-too-much-vitamin-d/)

    "Very high levels of 25(OH)D can develop if you:

    take more than 10,000 IU/day (but not equal to) everyday for 3 months or more. However, vitamin D toxicity is more likely to develop if you take 40,000 IU/day everyday for 3 months or more.

    take more than 300,000 IU in a 24 hour period."

    The dose you are taking is given to someone who is INCREDIBLY deficient, and you don't even know your numbers. A maintenance dose of vitamin d is 1000 per day for a regular person, a safe upper limit is 10,000 per day for someone who has absorption issues and must take constant high doses.

    Look I was very deficient (reading was 10) I was given 20,000 per WEEK. Which granted wasn't enough so now

    I'm on 5,000 per day.

    Please please please be careful when supplementing vitamin D, it's not candy. It's a hormone! You can over do it.

    Vitamin D, iron, selenium all have toxic points where they cause irreversible damage to the body, they should always always always be tested when supplementing.

  • I will get tested, but I feel good, my carrotid arteries are quiet under the stethoscope and my muscle strength is terrific. But, thanks.

  • That's good news! I doubt you have caused harm to yourself, it does take a lot to get there. Just want to make sure you're safe :)

  • Also vitamin K (hopefully you're talking about K2) doesn't keep vitamin D from causing problems, I don't know where you heard that. What it does is help move calcium to the bones and teeth. (K1 causes blood clotting so hopefully you're not on that).

    I'm sorry if I came off hard, I'm not trying to be an a-hole, I'm really concerned by some of the advice that happens from time to time on this forum and people being misled into taking high doses of whatever without being safe about it. Maybe you do need the dose you're on, but it's just smart to be tested or else you can really regret it. Just looking out for you and the others here I hope you understand

  • i forgot to mention that I insist on using Synthroid rather than a generic.

  • Not everyone gets on better on Synthroid rather than, say Lannett.

    In the UK we have four formulations of levothyroxine - each one has its adherents who prefer it to the other three. It is individual. There is absolutely nothing that says a packet which has a particular word on the outside is necessarily better for you than all the others.

  • I was never on any medication and felt fine just 6 months before my thyroid was removed in Oct 2015 for breathing difficulties. I found out that my D3 was very low. I was put on 100 levo per day. I had aches and pains and felt very ill after 4 months on it. Then the amount was increased to 150 per day I still felt bad. I joined this forum and put myself on NDT I now feel much better but still feel only 70/80 per cent of my old self. Good Luck.

  • So true, but my research tells me Synthroid is the most consistant. Remember, the incremental change from one dose to the next is less than the manufacturing tollerance. MCGs are tiny!

  • Are you on levo alone? The thyroid makes both T3 and T4 (about 10-20% is t3 with the rest T4) then later T4 also converts in the body to T3 (and other hormones). Many people can't convert T4 efficiently but even if they do the ratio of T3 to T4 is off in people who have no thyroid activity (when on levo alone). For this reason FT3 (free T3) is often low (even if FT4 is high) leading to many symptoms and problems. In people with who have undergone total thyroidectomy it is (in my opinion) crucial to be on both T3 and levo, or NDT, but you need something that provides you with both hormones at the source. Now if your aren't properly converting the T4 to T3 then you'd really be in for a bad time, and frankly many don't convert it well.

    Do you have recent thyroid test results including FT3 and FT4?

  • Yes - exactly like that. On 175 thyroxine after radioactive iodine 30 years ago.

  • Was your thyroid removed due to overactivity? If you had Graves' disease then you need to recognise that this is an autoimmune condition (same with Hashimoto's). You'll need to address the autoimmunity otherwise you'll feel unwell even if every other level is optimal. Have you had an antibody screen?

    The solution to autoimmunity could be as simple as a dietary change. Google the Autoimmune Protocol diet. I totally transformed my health in a matter of weeks. You will still need to get your thyroid levels optimal as well as D3, Ferritin, B12 and Magnesium and take vitamin K2 and a B complex and a good multivitamin too.

  • Brandicane,

    Ask your GP receptionist for a copy of your recent thyroid results and ranges and any results and ranges for ferritin, vitamin D, B12 and folate. Post them in a new question and members will advise whether you are optimally medicated on 150mcg and whether you need to supplement any vitamins and minerals.

  • Brandicane, feeling rubbish in all kinds of ways is typical after a thyroidectomy. It is best to ferry hold of your tears results and post them as a new thread. It is likely your dose can be improved.

  • One thing no one has mentioned (yet) is getting your sex hormones tested. Since thyroid function impacts hormone production, your lack of thyroid (and possible under medication and/or deficient T3/T4 supplementation) could be impacting your estrogen and testosterone production. It's all a balance and when things are out of whack, you just don't feel like yourself. I've been there and now that I am on the proper dose of thyroid meds, as well as the proper dose of estrogen/progesterone/testosterone, I now feel more like myself.

    Just a thought. Good luck!

  • Hi Brandi,

    Re the no emotions, I would look in to getting your adrenals tested. One of the effects of them being high/low is suppressed emotion. Also definitely affects libido. I mostly feel like I would rather stick a pen in my eye 😂 I've been taking Rhodiola and Siberian ginseng for adrenals and I occasionally feel like there may be a hint of sex drive returning...

    I didn't deal with stress well as a youngster and had panic attacks etc so I just thought I had learnt to switch my emotions off but have since learned that it's due to my high cortisol.

    Also make sure you always get a copy of your bloods so you can keep a record plus post on here as what the Drs say are normal and what actually is are two completely different things!

    TSH should be under 2, preferably under 1 for us to feel well.

    You could also try adding T3 or switching to NDT if you stillfeel unwell then you get all the T's not just T4.

    T3 is five times more active than T4 so if you're not converting T4 to T3 adequately you will ever feel ok just having T4 meds.

  • I felt that way too, but I still have my thyroid. All hormones seem to work symbiotically. Your need for something that your thyroid would have provided might be depleting other hormone sources. When I checked my estrogen and progesterone, they were tanked out. My osteopath prescribed bio-identical estrogen and progesterone and I felt fine within weeks. When she added a little testosterone to get my sex drive back, I felt anxious and my hair started thinning. I quit that one after 1 week. So age can factor in too. Still no libido, but I don't care as long as I feel good.

  • I find that vit E helps with the sex drive, I take 200 IU every day but have taken more in the past, depends on BP and heart health what is safe for you.

  • Some of your symptoms seem familiar from the years I spent on levothyroxine only after a total thyroidectomy.

    Increasing or decreasing the dose sometimes gave me a few days of feeling "not too bad" until the symptoms returned, sometimes with a vengeance. So it possibly is that you are in the same position I was for 8 years, the results of any blood tests you have had producing meaningless results, usually giving every indication that you are fit and well when you are in fact feeling as if you have just been run over by a bus. It is possible that you simply need some extra vitamins of some sort or need to avoid certain foods which others will inform you about, but it seems to me as if you are simply taking the wrong medicine.

    I tried to get a different medication from doctor but was told there wasn't a different medicine. He never mentioned that he could give me T3/Liothyronine which may hve reduced my symptoms. He never informed me of even the existence of Natural Desiccated Thyroid (NDT, often referred to by the brand name Armour)

    I discovered NDT and asked doc for some but this was refused as he said it was "unlicensed". But that is not a genuine reason for it not being prescribable. You need to read up a lot on this forum and other patient-led forums that may be mentioned here to discover quite how controversial this natural product actually is.

    Anyway, I got some NDT and after a week decided that it was the stuff for me, binned the remaining levo I had and determined never to take any more levo - EVER!

    It will probably/possibly work for you, so get some and try it, you have nothing to lose, but don't bother asking your doctor for it. I have fully informed my doc of what I have done and would recommend anybody else who takes NDT to do the same but to learn enough about the subject matter to be able to shoot down in flames every criticism he may make about your decision first.

  • Hi,

    Most patients who have had their thyroid removed feel better when on natural desiccated thyroid.

  • 150 micrograms of levo is a pretty stiff dose. Don't take "good" or "normal" as an explanation, get a full test suite (TSH/FT3/FT4/rT3/TPOAb/TGAb) and post the results here. It is quite possible that you would feel better on NDT or T3+T4, and if you are harboring Hashi's antibodies, you should be looking at methods to get rid of them.

  • You are needing much more than Levothyroxine can give you. If your doctor of three years thinks you need medication for depression -- I'd highly suggest you get another doctor! Your doctor clearly does not understand the intricacies of attaining and maintaining a normal life without a thyroid. He is using the diagnostic tool of TSH as a measure for assessing your thyroid health. He couldn't be more wrong!

    Once you are on thyroid replacement hormones TSH quickly becomes useless.

    There are other tests he should be using. He is clueless. I've known many like him. They know not what they do.

    Has your doctor ever checked your vitamins, minerals, and levels of sex hormones? If he says you're "good" while obviously not feeling well, then he's reached the limit of his intellect for helping you.

    Find another doctor. I would suggest a holistic one, as they are experts in restoring all vitamins, minerals and hormonal balances in the body.

    Levothyroxine is dependent on other vitamins and minerals being in place for conversion of it (T4) to the active thyroid hormone (T3) which gives you metabolism, energy, and your life back! The sex hormones also play a part and should be tested to optimize your overall balance and health.

    Trust me, you can get your life back. The first thing in order is to get a doctor who is knowledgeable about the drawbacks of Levothyroxine and knows when to make use of Natural Desiccated Thyroid hormone (NDT) as well as T3. One or the other (or possibly both) are ideal for restoration of health during the time it takes to get your nutritional and hormonal imbalances corrected.

    Please know that you will be fine in time. There are wonderful people here who can help you to be sure you are getting the proper care. Knowing what you need comes first.

    Healing Hugs!

  • Hello, I'm fairly new to this forum, I had a subtotal thyroidectomy in 1995, are you aware if the body can still naturally convert T4 to T3 when the residual thyroid no longer works correctly and Levo thyroxine is prescribed? Or do we still need some thyroid gland to produce any T3 naturally? Thank You

  • Hi there AnnieWalton! Welcome.

    Thyroid hormones are not converted by the thyroid gland. The conversion itself takes place mostly in the liver and some in the gut.

    Conversion is dependent on there being adequate vitamins, minerals and hormones in the body for the conversion process from T4 to T3 to take place. Conversion is not dependent on having a working thyroid.

    As we get older and/or have gut issues, the conversion process most often eventually becomes interrupted as absorption is diminished and nutrients are depleted. This is why the addition of T3 is so important when there are conversion problems; as the body does not have to convert T3.

    Hope this helps!

  • Wow, thank you for that reply. I've searched on various sites for the answer to that question and haven't found an answer. That really helps as I wasn't sure. Thank You very much 😊

  • To be wholly accurate, a very small amount of T3 is produced by the thyroid gland as it does put out both T4 and T3 but only at a ratio of approximately 17:1. That's certainly not enough to fulfill the need for T3 to optimize every organ, tissue and cell in the body.

    "Most of the T4 is converted into T3 in the liver. Approximately sixty percent of the T4 is converted into T3, twenty percent is converted into an inactive form of thyroid hormone known as reverse T3 (irreversible), and the remaining twenty percent is converted into T3S (T3 sulfate) and T3AC (triiodothyroacetic acid)."

    Just found a link I think you'll find interesting.

    drhedberg.com/the-thyroid-and-thyroid-hormones/

    Hugs!

  • Thank you so much! I have had various issues for 22 yrs and have only just started to do my own research!

    Thanks again 😊

  • You're very welcome, Annie! Healing hugs to you!

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