Great to have this site❤️❤️ I'm a little bit confused I have no thiyroid was removed in May last year( have posted on here my terrible journey for the last few years) I've had a few harsh words from my gp who just doesn't seem to know the first thing about thiyroid illness. My first question is: seeing as I have no thiyroid is levo/ medication the only way I can get my body to produce the hormones I need: second question how does levo really work on people with no thiyroid? Third: can levo affect you if your going through the menupause? Sorry I hope I'm not coming off a a thicko😁 but my gp as me at sixes and sevens my last bloods were awful:TSH.. 3.53 mU/L(ranges 0.30-4.50 mU/L--free T3 2.3 pmol/L(ranges--3.10-6.80 pmol/L(T4 10.9 pmol/L(ranges--11.00-22.00 pmol/Lm
Serum folate-- 2.8 ug/L(ranges-->2.50ug/L
Vitamin B12--310 ng/L(ranges--197.00-771.00 ng/L
Ferrtiin 26 ug/L(ranges--23.00-400.00 ug/L
Waiting for blood draw on the 14th of Jan then I will post them on here,
I'm not going to that particular gp anymore hopefully I can get to see the gp who diagnosed me also waiting on endo app to which my gp is not responding to.. Typical me thinks😠
Thanks in advance
Any response is appreciated ❤️❤️
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birkie
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I'm not getting on to well with the levo having real stomach /bowle problems I have reactive colitis 😩 and I'm sure the levo is flaring it up been on several types but no improvement in symptoms of thyroid or colitis symptoms since going on it.. 😭😭😭😭
Yes you are Under medicated. Your TSH needs to be under 1, your ft4 & ft3 need to be in the top third. Your doctor needs to tiltrate your meds up slowly in 25mcg doses, retesting bloods 6-8weeks after each dose increase). Has to be done slowly to allow your body to adjust.
Levothyroxine is a synthetic thyroid hormone. It is used to replace the T4 thyroid hormone that your body cannot produce due to your thyroid being removed. This means you will need to take all your thyroid hormones orally in tablet form. Its really important therefore that your doctor gets the dose correct as your body cant make up any shortfall.
You need to take your levothyroxine first thing in the morning with water on an empty tummy. Dont eat or drink anything, except for water for one hour after taking. This ensures you get the maximum uptake. I have my tablets by me bed & take them as soon as I wake....by the tine I get up shower dress etc the hour has gone! (Am slow in the mornings!)
You might find it helpful to gen yourself up on thyroid & how they work. Dr Peatfields book called Living with your Thyroid is a good one. Thyroid UK website has good info & a list of books. Knowledge is power!
TSH is still too high (unfortunately GPs seem to think that if it is 'somewhere' within the range that we're on a sufficient dose - not so, as the aim is a TSH of 1 or lower..
I am not medically qualified and have my thyroid gland. I am really sorry for those who have had their thyroid gland removed and therefore are worse off than those who still have their gland.
I believe that anyone who doesn't have a thyroid gland at all should be given, at the very least a combination of T4/T3 - T3 you may have to source your own as the NHS withdrew the prescribing of T3 due to the exorbitant cost of it. It's not our fault that the NHS is being bled (it appears to me) by the pharmaceutical companies. T3 can be sourced from abroad at a far cheaper price that the NHS pays.
Several scientific researchers have also found the benefit of a T3/T4 combination (T4 converts to T3) for those without a gland.
I, myself, have my thyroid gland but could only recover on T3 alone.
Your vitamin B12 is too low, should be nearer the top of the range. I'd pop along to the Pernicious Anaemia forum and ask for their advice. You need to be sure you don't have P.A. but have a low B12.
B12 is actually a pro-hormone and is essential to be optimal. As is Vitamin D. Both should be optimal.
FT3 - too low. The aim to be nearer the upper part of the ranges
T4 - too low - actually below range - should be nearer the upper part of the range.
T4 (levothyroxine) is an inactive hormone and has to convert to T3.
T3 is the Active Hormone and we have millions of T3 receptor cells in our body and brain/heart have the most. All need T3.
I believe that the medical profession believe that to treat hypothyroidism is very easy i.e. give levothyroxine and slowly increase until patient is well. The fact is that few doctors seem to be trained in dysfunctions of the thyroid gland and think that once the TSH (from the pituitary gland which tries to increase thyroid hormones when we're struggling - that causes the TSH to rise) is somewhere in the range (up to 10) that we're on sufficient hormones. That's not always the case as we need a Free T4 and Free T3 to be in the upper part of the ranges and a TSH of 1 or lower.
I must also state I'm not medically qualified but had undiagnosed hypo. I had to diagnose myself.
I to diagnosed myself with hyperthyroidism I knew I had it but gp said bloods were all in range so I carried on for 3 years gradually become more ill until a new doctor in my surgery diagnosed me just by looking at me... How come my normal gp didn't see this?? I ended up in thiyroid storm and very ill.. This gp who insists on seeing me because everytime I receive a e-mail the appointment is always with him I have changed it to see another gp.. He has insisted my vitamin other levels are OK.. He was not to concerned with my T3 or T4... He said my TSH was in range.. Did not listen to me when I said it should be 1 or below.. He became irratated and just didn't want to deal with me I find him impossible to talk to as I say I'm now going to se a different gp within the practice 👍
You must feel dreadful with results like that your ferritin is very low. I would try eating liver or pate a couple of times a week if you can. I think some people without a thyroid need both T4 and T3 and can do well on NDT have you asked about that? Sarah Vine who is married to Michael Gove is prescribed NDT and she still has a thyroid ... this shows you can get it here in the UK if you are rich and powerful enough. I will be putting this to my local MP at our next conservative meeting .... I can't wait to hear what she says about that! Sorry I am getting a bit annoyed after spending the morning logging into the Thyroid sites I am a member of and hearing all these stories of women who are not being treated adequately by the NHS.
Personally I think I might benefit from NDT... Or T3/ T4.... I suffer badly taking synthoid medication I was really ill on the anti thiyroid meds their are certain medication I cannot take because it flares my colitis up that's what I've been like since going on it I look pregnant my bowles are tender to touch I'm sure their inflamed.. Also gp says all vits and minerals are fine.. 😩
My first question is: seeing as I have no thiyroid is levo/ medication the only way I can get my body to produce the hormones I need:
I don't think you've understood what levo is - or your doctor hasn't explained it to you - maybe he just doesn't understand himself!
If you've had a TT, your body will never be able to produce thyroid hormones again. No matter what you do. The only part of your body capable of making thyroid hormone is your thyroid: and that has been removed.
Therefore, you need to take thyroid hormone replacement. And, that's what levo is: T4 - basically a storage hormone which your body needs to convert to T3, the active hormone.
Levo is not a medication in the normal sense of the word. It doesn't cure, repair or restore anything, it just replaces the life-giving hormone that your thyroid is no-longer there to make.
But, if you're asking if it's the only form of thyroid hormone available, then the answer is no, there are other things. You can take T3 - ready-made, as it were - either with levo or by itself, depending on your body's needs. Then there is NDT - Natural Dessicated Thyroid, dried pig thyroid, which contains both T4 and T3.
The problem is that doctors tend to know nothing about these other thyroid hormones, they only learnt about levo in med school, so are reluctant to prescribe them. And, they are also more expensive than levo, which is a draw-back. But, some people do buy their own, on-line, and self-treat.
second question how does levo really work on people with no thiyroid?
The same way it works on people who still have a thyroid which is badly functioning. It is absorbed into the blood from the intestine, then absorbed into the cells and converted to T3. Exactly what happens in the cells, I can't tell you! That's a little outside my area of understanding.
Third: can levo affect you if your going through the menupause?
In what way? I'm not quite sure what you're asking, there. Even if you're going through the menopause, you still need thyroid hormone to live. I don't think it has any effect on the menopausal process, that will follow it's natural course. But, I don't think levo will make it any worse, if that's what you're asking.
Your GP sounds awful - worse than average. But, he's probably completely out of his depth. And that does make some of them aggressive, I'm afraid. Glad to hear that you're not going to see him again.
Well I asked about what levo does because this is the doctor who after putting me down to 25mg said he would stop levo for six weeks to see how I am then.. 🤦♀️ I immediately posted his recommendation on here and was given some great advice.. Like don't let your gp stop your meds😲 I refused to come off them and another gp put me back up to 50gm then unfortunately I had to see that bad gp again we had a rather heated conversation upshot he knows nothing about thiyroid illness... My only bugbare with levo is I was started on 125gm I was still showing hyper symptoms 100gm still hyper. 75mg still hyper 50gm still felt hyper... On 25mg my symptoms slightly diminished but I then felt hypo... Now I've been on 50gm for 6wks I'm feeling the hyper symptoms again( sweating, slight internal tremors, raging thirst.,total exshaustion. No sleep wired up.. Pins and needles in hands. I thought maby it was the menupause rearing it's ugly head again... Started when I was 42 had total hysterectomy in my 30s..but died down at 53 only had a flush now and again.. But before when I was in it I sweated bad, shook, couldn't sleep typical menupause symptoms I'm now feeling the same but only on 50gm could 50gm be making me feel hyper???? I take with water at 6.30 every morning leave 2 hours before food and my other meds... 🤷♀️
As you have no thyroid, it's rather doubtful that 50 mcg could make you feel hyper. But, so many symptoms can be both hyper and hypo. Which is why we need blood tests to indicate which way we're going. The symptoms you cite above could possibly be hypo symptoms. Although pins and needles is usually due to low B12.
But, rest assured, the only thyroid hormone you're getting is that 50 mcg levo. Your body is not making any.
I'm afraid I don't know anything about menopause symptoms, I didn't have any.
I really think its time they got my appointment with the endo is chased up its been on hold since sep last year when my surgeon said he would refer me back to him.. I now have found out he hasn't done this but his secretary told me to contact my gp about it.. Again I'm running about doing their jobs 😠 I think I might have problems with the levo it needs sorted... 😩
Glad to read you have decided to see another doctor and good you hope to see the same one who diagnosed you originally.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10T3.
T4 - Levothyroxine - is a pro hormone and needs to be converted, by your body, into T3 which is the active hormone that the body runs on, and I read most people need about 50T3 a day to function.
Your conversion of the T4 into T3 can be compromised is your vitamins and minerals are not optimal - I notice our ferritin is still very low - this needs to be up and over around 70 for Levothyroxine to work effectively.
Conversion can also be compromised due to other health issues, including stress - emotional or physical, inflammation and depression.
I just think that if there has been a medical intervention and the thyroid either surgically removed, or ablated with RAI, both these essential hormones need to be on the patient's prescription for if, and probably, when required to restore these two hormone balances and show readings of T3 and T4 at acceptable levels within the ranges.
Some people can get by on T4 alone, some people simply stop converting the T4 at some point in time, and some people simply need both these vital hormones dosed and monitored independently to bring them back into balance and to a level of wellness acceptable to the patient.
I understand that T3 is in effect, about 4 times more powerful than T4 so you can see that without replacing just that little bit that your own thyroid produced, you have realistically been down regulated by some 20%.
Endocrinologists can prescribe T3 as well as T4 :
There is also Natural Desiccated Thyroid which is dried and ground down into tablet/grain form pig's thyroid. This thyroid hormone supplement contains all the same known hormones of that of a human's thyroid : T1. T2. T3. T4. and calcitonin and was the successful treatment of choice prior to the introduction of Levothyroxine, the blood tests and guidelines and Big Pharma. in the 1950'.
There are some endocrinologists prescribing this treatment option of NDT.
I have Graves Disease, am post RAI treatment and now getting better, self medicating with NDT. I was refused a trial of T3 through the conventional NHS channels but thanks to this amazing site I have been able to restore my severely compromised cognitive functions and get my life back on course. I'm a work in progress, like we all are, but much improved.
Thanks for your reply ❤️ my gp is fully a wear I have a bad gut problem I've been in and out of hospital with it.. The anti thiyroid meds they tried me on gave server bowle and stomach inflammation and their are certain meds I cannot take.. The levo seems to be aggravating the colitis I've been in bed for over 4 days with painful bowles swollen up like I'm pregnant 😢 I feel slightly better today although not right.. I was supposed to see an endo my surgeon was sorting this out but I've just found out his not done this I rang his secretary to be told to get in touch with my gp who's calling me on Thursday about it I just know he will not want me to see the endo 😩
"Serum folate-- 2.8 ug/L(ranges-->2.50ug/L
Vitamin B12--310 ng/L(ranges--197.00-771.00 ng/L
Ferrtiin 26 ug/L(ranges--23.00-400.00 ug/L"
ALL of the above are too low. Has the doctor started you on supplements? Hypothyroidism not only uses up some of these essential nutrients but also tends to make your gut less able to absorb them if you take extra.
Folate and ferritin are especially dire, barely over range. They need to be optimal.
You are also likely to be low on vitamin D, especially in winter, but doctors seem to be reluctant to test for this. Private tests are available though, and the D test isn't that expensive.
My results on folate and ferttine say normal no action so doc says he doesn't need to do anything 😠 I've asket for vit D to be done on my next blood draw on the 14th Jan he reluctantly agreed to do it.. Because I have a gut problem already I was wondering if I'm absorbing the levo.. I've had bad bowle /stomach problems way before I was diagnosed with graves.. Gp is knows this to be honest I've not felt any better since my op in May last year I'm struggling everyday.. 😭😭
They think a point or two within range is "Normal"! You need everything optimal together with the right dosage and type of thyroid replacement.
You could write a letter to the practice manager (you are in the UK?).
Explain the problem and include a bullet list of your symptoms and the ways they are affecting your life and ask why you can't get the help you need. Maybe print off a couple of articles from the TUK site (not too much or they won't read them). If that doesn't get results you may have to take it further, but it would be a good beginning.
"Because I have a gut problem already I was wondering if I'm absorbing the levo"
Mention that too. You may need liquid forms of medication. I'm pretty sure they are available, though no doubt more expensive. And ask about the very low (though "in range" ferritin and folate. B12 is probably not too bad, and I doubt if you could get a prescription for that but I'm sure it could be much better.
I'm not much of an expert on this though. SeasideSusie maybe you could help and check I've got this advice correct?
Now I've been on 50gm for 6wks I'm feeling the hyper symptoms again( sweating, slight internal tremors, raging thirst.,total exshaustion. No sleep wired up.. Pins and needles in hands.
You wrote the above in one of your responses to greygoose earlier in the thread.
One thing human bodies have evolved to do is stay alive as long as possible. When the body doesn't have enough thyroid hormones (either T4 or T3 or both) the body partly compensates by producing, or trying to produce, more cortisol and more adrenaline (the stress hormones produced by the adrenal glands). Stress hormones won't keep someone alive for ever if they have insufficient thyroid hormones, but it may give someone the energy long enough for them to get help.
Having much higher levels of cortisol and adrenaline in the body than normal has many symptoms, several of which you've listed. You are confusing high cortisol / adrenaline symptoms with the symptoms of having too little thyroid hormone. Every time you reduce your thyroid hormone intake you are forcing your body to try and produce more cortisol (and probably quite a lot of adrenaline too) to keep you going and thus adding to your symptoms.
(I'm not sure why you are so thirsty - I haven't come across that as a symptom before.)
If your body is trying to produce lots of cortisol for a long time then eventually the adrenal glands may struggle too, and then people are really in very serious trouble with too low thyroid hormones and too low stress hormones.
In some people optimising their thyroid hormone levels will allow the adrenal glands to normalise their function too. In some people the adrenal glands have been pushed too much for too long and normalising their function can be very difficult.
Bear in mind that anything being out of kilter physiologically can stress the body and thus affect the stress hormones. So, some examples of things that can affect the body that are not considered, or are rarely considered, by doctors in connection with poor thyroid function :
1) Poor diet - too little fat, too little protein, too much carbs and sugar
2) Eating too little - dieting is NOT a good idea in your situation
3) Over-exercising
4) Poor nutrient levels
You will have to start somewhere to have a chance of improving your health. Taking supplements to improve your poor nutrient levels would be a very good start. And don't ever see that doctor who threatened you with taking you off your thyroid meds ever again. You don't have a thyroid so you could go into myxoedema coma and die - and I'm not exaggerating. The fatality rate for myxoedema coma is quoted as being anywhere from 25% - 60%.
I would not suggest worrying about your cortisol at the moment - I only brought it up to explain why you think you are hyper on low levels of Levo when you have no thyroid. You need to optimise your thyroid hormones, your nutrients, and your diet first. Worrying about cortisol when you have no thyroid should come much, much later.
I know you said about not bothering to much about my adrenals but I was just looking at some results from 6th Nov..i was rushed to hospital about 4 months ago passing blood in my urine i was vomiting and in pain in my side, consultant said he thought I'd passed a kidney stone.. I m looking at my blood tests it says
The top of the range for Sodium is usually around 146, so your result is well within range. The same is true of the other results, except for creatinine which is very slightly over the top.
The AKI (acute kidney injury level) is often recorded as 1 in my own testing results - and my kidneys are absolutely fine. I don't think I've ever seen a level of 0 so it might not even exist.
I don't think you have anything to worry about at the moment.
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