hi everyone I am new here 😊 I am a full thyroidectomy patient so I have no thyroid which was fully removed in June, I also have no working parathyroid glands either 🙈. I am on t4 only but I have been Educating myself and I can not believe I am only on t4 explains why I feel horrific even though my levels are supposedly within range, however my free t3 and free t4 are actually in trh low end when compared to what thyroid experts optimal range is as apprised to lab ranges. My TSH is also low ans the consultant keeps banging on about this being low, however I have now educated my self that now that I have no thyroid I will not have any TSH cos there is no bloody gland to produce this, how does a endocrinologist not know this! I can’t believe my reverse t3 has not be checked, because clearly I do not convert to properly. But if I have no thyroid then I have no gland to produce t4 or t3 therefore I should be in t4 & t3, but nope I’m just in t4 and the doctor thinks I’m crazy! Also my antibodies are another story they are still high which they always will be because automimmune but the doctor obviously though removing my thyroid would make those magically disappear. Nope doctor that’s not the case now I will just get some other form of autoimmune unless my antibodies are brought down! I am trying to find and thyroid expert in the uk who believes is common sense and obvious science! So would love to hear of your stories and if you can recommend a thyroid expert where I can be prescribed t3 because they are experts . Thanks all
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Thyroid36
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now that I have no thyroid I will not have any TSH cos there is no bloody gland to produce this, how does a endocrinologist not know this! I can’t believe my reverse t3 has not be checked, because clearly I do not convert to properly.
I'm afraid you have some misconceptions...
TSH is produced by the pituitary, not the thyroid. Whether your pituitary will produce enough TSH in future (to keep your endo happy) is anybody's guess. If TSH has been low for a long time it might never rise again, or it might take a long time.
Having said that, anyone who doesn't have a thyroid ought to be on treatment which includes T4 and T3. I get the impression that your TSH is being used to monitor your thyroid hormone levels and decide your treatment dose. This is very rarely successful in people who have had their thyroid removed. Instead your Free T4 and Free T3 need to dictate treatment - and having results in the lower half of the range is very unlikely to be enough.
Another misconception is that Reverse T3 is an essential test. It isn't. It could be raised or low for all sorts of different reasons, and I think it only relates to the thyroid in one case. SeasideSusie and greygoose know much more about Reverse T3 than me.
I don't know anything about the parathyroid glands, so can't comment on their removal.
thank you so much for your reply since I only had my thyroid fully removed in June this is all so new to me. I am just in so much shock that I allowed doctors to me what is right when it’s just all wrong 🙈 I agree 💯 how can a full thyroidectomy patient function properly on t4 only it is never going to work. If a car engine fails you don’t just go out half a new engine in you put a full engine back in for it to run properly again. I’m just gobsmacked I’m trying to find a good expert in the uk who tests E everything to make sure eveyeyhing is working right cos like u said so many factors needs to be considered but 💯 I need t3. I didn’t even know what the parathyroid gland was until after surgery , but unfortunately the parathyroid glands Failed to work again so now I am on alcacidol and ADCAL because I have not parathyroid hormone either 🙈 thank you for reply I was excited for my first reply 🙌🏻☺️ I feel less lonely trying to navigate this thyroid situation
Hi Thyroid36, welcome to the forum. Sorry you are having so much trouble getting proper treatment, but that seems to be the norm these days.
So, why did you have your thyroid removed? Did you have Graves' disease?
I have been Educating myself and I can not believe I am only on t4 explains why I feel horrific even though my levels are supposedly within range
Well, actually, it doesn't explain it at all. A lot of people do very well on T4 mono-therapy. But, there are several reasons why you might not feel well.
Do you have copies of your blood test results? Just saying the results are 'in-range' is meaningless, because of the way the ranges are composed. So, to be able to comment intelligently, we need to see the actual numbers: results and ranges. Always, always get printouts of your results from the receptionist, and keep your own records. It is your legal right to have them.
however my free t3 and free t4 are actually in trh low end when compared to what thyroid experts optimal range is as apprised to lab ranges.
Any 'expert' that tries to give you an 'optimal range' is not a thyroid expert at all. Because there are no universal optimal ranges. Optimal is not a number, it's how you feel. We are all different and therefore need different levels. Any blood test range can only be a rough guide at best, not not something to aim for. What we aim for is feeling well.
Besides, ranges vary from lab to lab, depending on the machine they use for the analysis.
My TSH is also low ans the consultant keeps banging on about this being low, however I have now educated my self that now that I have no thyroid I will not have any TSH cos there is no bloody gland to produce this, how does a endocrinologist not know this!
Well, actually, you do still have a gland that makes TSH, because they removed your thyroid, not your pituitary. TSH is a pituitary hormone. But, obviously, when the thyroid is removed, the feed-back loop is broken, so the TSH is of little use. Having a low TSH is not always a problem, and that's where the endos' knowledge is sadly lacking.
I can’t believe my reverse t3 has not be checked, because clearly I do not convert to properly.
Testing for rT3 is a waste of time and money. It doesn't give you any information that you cannot get from the other tests. You do not need it to see how well you convert, you can tell that by comparing the FT4 with the FT3 tested at the same time.
An rT3 test will tell you if you have high rT3 but it will not tell you why. And, there are many, many reasons for high rT3, and only one of them has anything to do with thyroid. And, that is when the FT4 is high in range/over-range. You say that your FT4 is low, so it will not be causing high rT3.
Also my antibodies are another story they are still high which they always will be because automimmune
Which antibodies are you talking about?
I will just get some other form of autoimmune unless my antibodies are brought down!
No, that's not true. Antibodies are specific to one kind of autoimmune disease. And, thyroid antibodies do not cause diseases, anyway, the are the result of the specific disease they are associated with. For example, TPO and Tg antibodies are caused by Hashi's. TSI and TRAB are the result of Graves'.
I'm pretty certain an endo would have no idea how to bring down antibodies, anyway. Or even if that's possible.
hi Greygoose thanks so much for your reply, I had thyroiditus for nearly 7yrs then hypo, but I had to have my thyroid removed because it was so big in the end I couldn’t swallow and I had lots of nodules and a thyroglasal cyst. It’s so sad that the ones we seek to help us get better can’t help. I am extremely uneducated in this field and I am so thankful I found this forum to learn and understand and get myself better. 💯 how we feels is what is right not numbers on a peice of paper. omg yes I have just realised this regarding my blood results even that seems to be a chore for the secretary to send it over, like I’m a criminal for asking 😂😂 what ranges should I be looking at for free t3 and free t4 ? I appreciate your reply thank you so much
You shouldn't be look for any ranges. The ranges are there as a rough guide. But, you know how you feel, and if you don't feel right you are either over-medicated (over-range FT3 - highly unlikely!) or under-medicated (low in range, and far more likely). But, I can't give you numbers that express the way you feel.
yes I had hashi’s . I take Levo 5.30am and hour before Any food and drink and I take my calcium and alfacalcidol at dinner time so that it’s not mixed with thyroid medicine. Yes I think it’s same brand box always looks the same but I actually have never check tbh.
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Many Hashimoto’s patients find they need to b3 both gluten and dairy free
thank you for your reply. Wow yet the consultant said this was good range 😓 🙈 . No wonder I feel so rubbish. Yes I had bloods done at 9 and last does was taken 24hrs prior . I was originally on 125mg after my thyroidectomy and then after 3 weeks they lowered it to 100mg I will try get all my bloods from end of June to today. I have have been on 100mg since end of July. I weigh 63.5kilos I’m 5ft 2 in height (I can not budge or lose any weight either) . I am on brand almos. What’s your advice on adding t3 as well? I emailed my endocrinologist last night and he is talking about ruling our cushings 😤😳 and ignoring the fact I’m saying my levels are not right I need to adjust my medication. I find looking at my numbers so confusing because I am not educated at all about what is right and what is wrong but I know I feel awlful. I have joint pain as well now 🫣
Hi Thyroid36, Sorry to hear that you are still feeling rough after your thyroidectomy.
You have had some good replies and solid advice.
I have also had a thyroidectomy and had all my parathyroids removed, probably fourteen years ago. It has taken me this long to learn about my own optimum levels and I'm still learning. However, I have learnt that what I used to blame on lack of thyroid hormone is actually fluctuating calcium levels. I don't take calcium supplements, but do take One Alpha, ( alphacalcidol) this allows me to get calcium from my diet. It was never explained to me about how important calcium levels and parathyroids are or how dangerous high or low calcium is. Calcium is not stored in the body and fluctuates throughout the day.
The website for Parathyroid UK is really good and explains well, how to live day to day with fluctuating levels. I am still learning to recognise when I need to eat a little more calcium, before exercise etc and the fatigue it causes when I've overdone exercise or packed too much in a day.
With regard to taking levo, I have found I feel better with my ranges in the higher numbers of the ' normal' range.
I have never been able to get T3 prescribed but have been trying now, for four years, to try and get all my vitamins and levels optimum before I ask for T3 again. At the moment I feel quite well, winter is usually when levels dip.
Good luck, I hope you manage to feel much better soon too.
wow thank you so much I have just joined the parathyroid site so this amazing thank you. It’s so hard and not fair that we have to tell the doctors the results are not right because I do not feel good! I wish you well also and nice to meet u
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