Morning all, I'm having problems getting my thyroid hormones steady. (No thyroid) Have previously been under medicated for a long time. Had advice off [Dr M.] and was advised to take small doses of metavive 1 ( I increased to 4 a day)along with my thyroxine (100mcg). Felt my best in a long time, but then suddenly crashed. Depression anxiety and jitters. Medichecks confirmed I was over medicated. I have now reduced my thyroxine to 75mg and 3 X metavive 1 and I still feel anxious and depressed, my T3 has come down to below half way in the range but I still feel over medicated. Very, very anxious and nervous with feelings of dread and depression. I have very little energy and my heart feels like it's pounding. Walking up the stairs is wiping me out. I feel like there is adrenaline coursing through my veins. Can I be underdosed on T3 but still feel hyper?. Can anyone advise please? I'm at a loss, I'm scared to change doses as feeling worse terrifies me
TSH 0.01 (0.27 - 4.2)
FT3 4.46 (3.1 - 6.8)
FT4 19.1 (12 - 22)
FOLATE - 7.39 (>3.89)
VIT B12 119 (37.5 - 150)
VIT D 115 (50 - 200)
FERRITN 52.4 (13 - 150)
[Dr M.] has recommended I stop thyroxine altogether and take metavive only. I don't know about this, I'm so scared to feel worse. I think I'll never get well again and admit to having very dark thoughts which is utterly terrifying
Thanks for reading
Donna
Written by
Liam12
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I suggest that you follow [Dr M's] advice and take Metavive only. Then you can get back to her if you still have problems and you can make minor adjustments.
Are you actually a patient of Dr M? If so you might need to make a decision on whether you are going to stick to her advice or not. I recall that she seems to have recently gone over to advising patients take Metavive (correct me if I'm wrong) because she can't now prescribe; however she was happy enough to prescribe Levothyroxine some years ago to my daughter-in-law who was obviously hypo by symptoms and suffered multiple miscarriages but could not get a diagnosis/treatment on the NHS.
TSH 0.01 (0.27 - 4.2)
FT3 4.46 (3.1 - 6.8) = 36.75% through range
FT4 19.1 (12 - 22) = 71% through range
Medichecks confirmed I was over medicated.
Well that's rubbish isn't it, a mistake they frequently make (along with many doctors) because they're looking just at your TSH and not the actual thyroid hormones FT4 and FT3 which are both nicely in range (it's these that tell you if you're overmedicated, in particular FT3).
Those results clearly show you're low in T3 and if you were asking for advice here based on those results many of us would suggest you take Levo plus T3.
Very, very anxious and nervous with feelings of dread and depression. I have very little energy and my heart feels like it's pounding. Walking up the stairs is wiping me out.
Have you checked the list of symptoms of hypothyroidism?
Have a look under Non-Physical hypothyroid signs and symptoms
I feel like there is adrenaline coursing through my veins.
Have you had adrenals checked with a 24 hour saliva test for cortisol plus DHEA?
Folate and Ferritin are both low, folate is recommended to be at least half way through range and the optimal ferritin level for thyroid hormone to work properly is said, by some experts, to be 90-110ug/L. Maybe look at improving those.
Hi yes that's right seasideSusie she has relinquished her medical license with the GMC.I know I am paying a lot for her help, and she is highly regarded and she does know her stuff, but I always come back to this sight for advice, you've always been so helpful and have always steered me in the right direction before.
Did she make your daughter in law well?
My FT4 seems quite high, is this cause for concern or should I just concentrate on increasing the T3?
I've been supplementing on my vitamins and thought they were ok, ill work on increasing those.
I've not had a cortisol test, Dr M has diagnosed me with adrenal fatigue based on my symptoms and has recommended some adrenal support, pregnenolone and ashwagandha.
Yes, and she went on to have a successful pregnancy. When she left hospital after the birth her discharge letter said "Thyroid test results OK for someone on Levothyroxine", and when her GP saw this she said "I suppose I'll have to accept the diagnosis and prescribe Levo for you now". She is my ex-daughter in law now so no idea how she's doing.
I'm not 100% sure about metavive as I can't work out how much T3/T4 I'm getting.
As there is no declared hormone content in Metavive you wont know. If you wre on Levo plus T3 then you'd adjust the dose of each until you found your sweet spot.
Yes I think that's what I'm going to try. Do I have to find a prescribing doctor or can I buy this direct from someone?.Also, would you recommend this route before trying a NDT such as armour?
NDT didn't work for me, it's great for some people but not all.
As for T3, that's personal choice. I self source T3 and get Levo from my GP. When self medicating you have to be prepared to do private tests and monitor yourself.
If you want to try and get it on the NHS you will need a referral to an endo who will initiate a trial but you would have had to be on Levo only and endo would have to agree that you may benefit from T3. Or you could go down the private route and find a private, T3 friendly endo. If a private endo prescribes you wont be able to get it on the NHS after that unless you see an NHS endo.
I have given up on going to my GP for anything regarding my thyroid. My endo at the hospital is no better.I'll go the private route, we're not well off but I can't think of a better use for my credit card. Thankyou
You can send for the list of thyroid friendly endos (both NHS and private) from ThyroidUK by emailing
tukadmin@thyroiduk.org
If there are any that you are interested in you are welcome to ask on the forum if anyone has any feedback on them. You can name a doctor when asking for feedback but replies must be by private message as we can't discuss individual doctors openly.
It was over 20 years ago that I used NDT so I have no recollection of how I actually felt but I do know that it didn't work well for me. However, at the time there were things that are advised to check and optimise today (key nutrients) that weren't suggested to me at the time. Maybe it didn't work due to deficiencies/low levels, I'll never know.
You would need to be seeing a doctor that can prescribe T3 to be sure of getting that. You can email info@thyroiduk.org for a list of prescribing Endo's/doctors.
You can't be hyper as you haven' a thyroid but you could be over medicated which you are not, but until your vitamins and minerals are up and maintained at optimal levels you are likely to feel very shaky, anxious and unwell.
Everywhere I researched when told I was ' just a little low in ferritin ' suggested that ferritin needed to be over 70 for any thyroid hormone replacement to work well.
After supplementing ferritin and all the other core strength vitamins folate, B12 and vitamin D I was then much better placed in my recovery - post RAI thyroid ablation in 2005 for Graves Disease.
You may well feel improved adding in an adrenal glandular as the adrenals pick up the slack when the thyroid is not optimally medicated - which I believe is where you currently are.
The issue with the OTP supplements is that there is no control on the contents within the bottles and therefore no guarantee of the amount of T3 and T4 in each dose.
Since you haven't a thyroid and totally reliant and fully dependent on full thyroid hormone replacement I think it wise to take a controlled, laboratory tested and certified medicine with a known content of T3 and T4 thyroid hormones in each dose.
As detailed in my post to you around a year ago - a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1 T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg with T3 said to be around 4 times more powerful than T4.
Some people can get by on T4 - Levothyroxine only :
Some people find that T4 doesn't work as well it might and find that by adding in a little T3 - Liothyronine - making a T3/ T4 combo - and likely replacing that little bit of T3 they lost when they lost their thyroid - they feel better:
Some can't tolerate T4 at all and need to take T3 only :
Whilst others find their health and well being restore better taking Natural Desiccated Thyroid which contains all the same known hormones as the human gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.
NDT. Desiccated Thyroid Extract is the original treatment for hypothyroidism and has been used successfully for over 100 years with most brands containing 9mcg T3 + 38 mcg T4 in each tablet/grain.
NDT is still meant to be available on a ' named patient only ' prescription from your doctor though I feel fully let down as I was told " No " to any treatment options other than T4 and have had to do this all by myself with the help of this amazing forum and a couple of books.
I have tried all the options and have settled on NDT some 5 years ago now and am much improved and buy my own NDT and supplements and run my own full blood tests once a year.
Thankyou pennyannie, i was doing well on metavive/ levo for a while, but I increased the metavive maybe too quickly in hindsight, and my T3 was well over range. It was a horrible feeling being over medicated so I dropped 25mcg levo and 2 of the metavive which has clearly sent me too far the other way. It's just awful trying to find the right balance. I'm sure there are other hormonal shifts going on too, I'm 49 and I get very, very low and think there's no hope.
Thankyou for taking the time to reach out, it means more than you know x
Yes I fully understand and have over medicated myself and also been in a dark place on a couple of occasions.
I just thnk for a few pounds more, you owe it to yourself to at least try a medically graded thyroid hormone replacement as you have no ability of your own to compensate for a supplement of questionable content.
Yes - i tried all the treatment options myself and settled on NDT.
If you go into openprescribing.net and then go into analyse you can see by surgery and CCG/ICB area how active/ supportive your area and doctor are in prescribing -
enter Liothyronine as the drug for T3 and Armour as the drug for NDT.
The most well known brands - Armour and Efra - are meant to be available on the NHS as a ' named patient only prescription " and up until around 20 odd years ago all the treatment options, T4. T3 and NDT were readily prescribed by your doctor, if T4 monotherapy did not resolve symptoms.
If you can afford to go private you will have more options and if preferring a face to face obviously this might restrict your options a bit but read many now offer video consults.
Thyroid UK - the charity who support this forum - hold a list of sympathetic doctors, endos and thyroid specialist that forum members have recommended - just contact admin @ thyroiduk.org for the recommended list.
You can also ask for forum members opinions on any person you wish to see and your replies must be through the Private Message facility - the icon above that looks like a paper plane - as we can't openly discuss anybody.
Same goes for asking for suggestions as to private sourcing :
Brilliant , thanks so much. Another question, sorry, when you say you didn't get on with T4/T3 combo, in what way? Did you feel no benefit or did it make you feel worse?
No - taking a little T3 was that light bulb moment - and I knew immediately I had made a good decision.
But I got confused on what I was doing - you know that brain fog ?? - and over medicated, became very turbo charged, and frightened myself.
I then couldn't source the same T3 and the replacement T3 I purchased in bulk just gave me a horrible headache and I couldn't lift my head off the pillow - though I gave this pot of 100 tablets to a friend who was very grateful and could use them ?
So I switched back to T4 for a couple of months and then switched to NDT and it was much softer on my body, no turbo charging and a very easy transition.
I have Graves Disease and had RAI thyroid ablation in 2005 - so without a thyroid but for totally different reasons and Graves is an AI disease that generally gets diagnosed when the immune system attacks the thyroid and drives up the T3 and T4 levels higher and higher and considered life threatening.
So mainstream medical can't solve the AI component of Graves, there is no cure, so the thinking is by removing the thyroid, they have removed the threat of the T3 and T4 rising high higher - it's a bit of simplistic over view but I was well on the Anti Thyroid medication and deeply regret loosing my thyroid to an AI disease that I still have - and I've been more ill since RAI thyroid ablation.
It's so frustrating isn't it? I know I've had my thyroid removed for a totally different reason to you , and i suppose I had no choice, but it really is life changing.
I sent you a Private Message yesterday - just check that you have it as it's also the facility within this forum that I think I explained to you that you may want to use re recommended specialists etc once you have the forums list of recommended specialist from admin at Thyroid UK - thyroiduk.org
I wasn't given a choice but interestingly the research now suggests for Graves Disease it's best to stay on the AT medication long term and save the thyroid - though much more expensive to treat and as far as i'm aware the research isn't being picked up by NICE guidelines and Hospital Trusts.
I'm avoiding that for now. I believe I already have low cortisol and this could make it worse. I'm concentrating on vitamins for now and a low carb diet.
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