I have a normal tsh over the past year, between 1.4 and 5.4 my ft4 was always subclinical but in the last year I have had increased ft4, around 24pmol obviously this has been found using fingerprick test because the nhs won’t test Ft4 if Tsh is in range. I have had hyper symptoms for the past 9-10 months which have got worse even tho my tsh is 3.4 as I type. I have lost 2 1/2 stone, have increased anxiety, and insomnia, but most recently excessive sweating for no reason. I have had thyroid ultrasound which shows enlarged heterogeneous lobes and have feeling of compression and nausea due to swallowing feeling strange. My latest bloods which an endo has looked at show antibodies of 4509 but a normal tsh, I have been diagnosed with thyroiditis but have been told there’s no treatment just levo, now I understand that you can get thyroiditis and end up having to take levo as a result but getting it while on levothyroxine anyway? And still having the symptoms of hyper, my doctor won’t reduce my dose age because of my tsh being where it is. I believe through research that I am probably suffering hashitoxicosis, anyone have any thoughts as to anything else going on, I have made the decision to reduce my dosage myself to see if it makes a difference to my symptoms.
At end of my tether: I have a normal tsh over the... - Thyroid UK
At end of my tether
Hi Clc4299, welcome to the forum.
I have been diagnosed with thyroiditis but have been told there’s no treatment just levo,
That is correct. High antibodies indicated Hashimoto's Thyroiditis - or, as the NHS calls it, Autoimmune Thyroiditis - and autoimmune disease where the immune system slowly destroys the thyroid.
There is no existing treatment for the Hashi's itself - it is very badly understood - what is treated is the resulting hypothyroidism.
now I understand that you can get thyroiditis and end up having to take levo as a result but getting it while on levothyroxine anyway?
The odds are, you have always had Hashi's, and that is why you're hypo. Were antibodies not tested at the time of diagnosis? But, in any case, taking levo won't have any effect on the Hashi's. It will not lower antibodies, it will not stop the destruction of your thyroid. It will just replace the hormone that your body can no-longer make enough of for itself. It's not a cure for anything. It's thyroid hormone replacement.
I believe through research that I am probably suffering hashitoxicosis
Doubtful with a TSH over 3. A TSH that high means you're still hypo. It's in the range, but that doesn't mean much. It's most definately not 'normal'. A 'normal' (euthyroid) TSH is 1, but hypos very often need it below one to be well.
Your doctor is right not to reduce your dose because it will probably make you worse. How much are you taking, by the way?
Of course, just testing the TSH is totally inadequate, and the NHS is way out of line, there. Once you are on thyroid hormone replacement, the TSH test isn't much use. The most important number is the FT3, but they very rarely test that.
The levo you are taking is the thyroid hormone T4, basically a storage hormone, which doesn't do much until it is converted into T3. But we're not all very good at that. And, if your FT4 is high, it probably means that you are a poor converter, and that your FT3 is low - your symptoms could very easily be hypo symptoms. But, the only way to know how well you convert is to get your FT4 and FT3 tested at the same time. Obviously, your doctor is not going to do that, so how do you feel about private testing?
Details of private tests here:
thyroiduk.org/help-and-supp...
Reply to everyone, tpoab of 13000+ were found many years ago I was test tft yearly until I had an out of range tsh at whic point I was put on levo, was stable on 50 mcg levo until 2019 when my tsh was again out of range, after many dose increases and bloods I got back in range in sept 2020, around the same time I noticed a strange feeling when I swallowed , over the past year have had bloods done by thriva & Medichecks, have had vit d, b9 b12 ferritin coeliac all are good / optimal
Here are my result from sept 20 to now, Sept 20 was when I was back in range for the first time in a year and my meds had been increased from 50mcg to 125mcg
Thriva Sept 2020
Tsh. 2.44 Range 0.2 -4.7
Ft4. 20.2. In normal range for thriva
Thriva Jan 2021
Tsh 3.57
Ft4 19.1
Ft3. 4.9
Tpoab 600
Thriva March 2021
Tsh. 2.62
Ft4. 23.1 High in reference range
Nhs test April 2021
Tsh. 1.9
Medichecks May 2021
Tsh 1.4
Ft3. 4.6
Ft4. 23.9. Above reference range
Nhs July 2021
Tsh 3.4
Tpoab 4509
Due to swallowing issues and weight loss, insomnia, anxiety increased fatigueI had these tests done, the excessive sweating is new over the last 3-4 months
the ultrasound has shown enlargement on both lobes by 7mm on one and 8 mm on the other.
With my Ft4 being consistently high and symptoms that are more synonymous with being hyperthyroid and ft3 showing that I convert perfectly well I assumed I was over medicated or had in fact been Hashi toxic I had so many tests because I wanted to show my dr that I was having continuously high Ft4 results and the symptoms suggest either over medication or hyper but the tsh paints a very different picture.
I also have fibromyalgia so having increased fatigue to the point I’m falling to sleep within 2 hours of waking up has now resulted in me having around 4 usable hours a day if I’m lucky SlowDragon fibrolinda greygoose
Thanks everyone
High thyroid antibodies confirms autoimmune thyroid disease
Are you on absolutely strictly gluten free diet
Essential to regularly retest vitamin D, folate, ferritin and B12
Thyroid results
How long have you been on 125mcg levothyroxine
Do you always get same brand levothyroxine at each prescription
Medichecks May 2021
Tsh 1.4
Ft3. 4.6
Ft4. 23.9. Above reference range
Nhs July 2021
Tsh 3.4
Were both latest tests done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Reply to everyone, tpoab of 13000+ were found many years ago
OK, so you already knew you had Hashimoto's Thyroiditis. You haven't just developed it. And, as I said, taking levo won't have any effect on TPOab.
I had an out of range tsh at whic point I was put on levo, was stable on 50 mcg levo until 2019 when my tsh was again out of range
Well, your TSH may have been 'stable' but at what level? And, how did you feel? It's not about stabilising the TSH. It's about getting enough T3 into your system to make you well. So, I think your doctor missed quite a few points, there!
I'm afraid your results mean nothing to me because I don't know all the ranges. Ranges vary from lab to lab, so please always put them with your results.
With my Ft4 being consistently high and symptoms that are more synonymous with being hyperthyroid and ft3 showing that I convert perfectly well I assumed I was over medicated or had in fact been Hashi toxic
Well, none of your FT3 results look very high - as far as I can remember the top of the range for these companies is 6.8, no? So, you weren't over-medicated and you weren't having a Hashi's flare - aka Hashi's 'hyper' swing.
As I said above, T4 (levo) is basically a storage hormone, so having that over-range doesn't mean over-medication. It wouldn't cause you to feel 'hyper'. But, I'm afraid that your FT3 does not show that you convert perfectly well - if I'm right about the top of the range - quite the opposite, in fact.
It could very well be low FT3 that is causing the fatigue.
I’ve just been diagnosed with thyroiditis by sonographer and confirmed with the blood test last week , endo has seen the result and said no treatment needed. The test result show the thriva range to make it clearer Ft4 16-22 is classed as normal 22 and over is high same with Medichecks.
What I am trying to find out is why I continue to have hyper type symptoms when my tsh is clearly hypo and why my Ft4 remains elevated when it should be lower end of scale not upper. And if I have more than I should have (over range) surely taking more via levo is just going to exacerbate my symptoms! Surely that makes sense . I’m sorry if I’m confusing you but I have spent all but the last two years completely stable on meds with no marked symptoms other than fatigue, Fibro has knocked my world for 6 and now this, if it wasn’t for the fact that I can’t do anything without dripping with sweat I could cope, this however is highly embarrassing
The ft3 of 4.6 is optimal with that test provider. I guess I’m never going to get the answers I’m looking for but thanks all for trying to make me understand. And saying I have actually just been diagnosed with thyroiditis I mean that is the diagnosis they gave me for the enlargement of my thyroid not what I was told years ago I was told I was sub clinical hypo, as my Ft4 was always in the upper 3rd of the range. The first time I heard thyroiditis was 2 weeks ago
Optimal is not a number, it's how you feel. That test provider is very, very wrong to talk about optimal ranges. It confuses people. It's a red herring!
And saying I have actually just been diagnosed with thyroiditis I mean that is the diagnosis they gave me for the enlargement of my thyroid not what I was told years ago I was told I was sub clinical hypo, as my Ft4 was always in the upper 3rd of the range.
Tell me, what do you thing 'thyroiditis' is? The suffix 'itis' just means swelling. So, that was not a diagnosis, he was just telling what you already knew: your thyroid is swollen.
Now, there could be many reasons for that, and infection or something, BUT you had very high antibodies 'years ago', which means that you have Hashi's - whether they told you that or not, and they often don't - and it doesn't go away. Had you had a knowledgeable, intelligent doctor at the time, he would have told you something like this:
"Ms X, you have Hashimoto's Thyroiditis - aka Autoimmune Thyroiditis - confirmed by high antibodies. Hashi's is an autoimmune disease where the immune system slowly destroys the thyroid and makes you hypothyroid. However, for the time being, your TSH is in-range, so you are classes as clinical hypo. It will get worse."
But, instead of telling you that, they just gave you half the information. But, the fact of the matter is that nothing has changed, you don't have a new disease, you have always had it. They just didn't tell you.
This is where the problem lies my doctor is awful, and even questioned my compliance when in 2019 after being on 50mcg for years I suddenly required dosage increases to 125mcg. As for thyroiditis I believe to mean inflammation as that is what I was told, as he has taken guidance from an endo that everything is ok because I’m “ In Range” is not interested in finding out what is causing my symptoms which have become extremely debilitating in such a short space of time. My fibromyalgia was diagnosed by a rheumatologist after years of chronic pain but with the crossovers between the symptoms it is extremely hard to know what causes what. The lowest my TSH has ever been is 1.4 and that was earlier this year while all of these other symptoms have been present so I haven’t “felt well” even when it was at its lowest. I am going to be seeing a different doctor because he has just let me suffer and continues to do so, I’m actually hoping when I go to ent that they decide because it’s causing some compression and symptoms that they’ll decide to take half away and then at least I will be able to eat without being constantly nauseous.
Anyway I would like to thank you all for the time you have given me and helping me understand what is going on. Pity my Gp couldn’t afford me the same courtesy.
Thanks
Cheryl
I’ve just been diagnosed with thyroiditis by sonographer and confirmed with the blood test last week
OK, but diagnosing you with 'thyroiditis', just means you have Hashi's, but you already knew that because your antibodies were high 'many years ago'. There's nothing new in this diagnosis.
endo has seen the result and said no treatment needed.
But, you are taking treatment: levo is the treatment.
What I am trying to find out is why I continue to have hyper type symptoms when my tsh is clearly hypo
The symptoms you are experiencing could just as easily be from under-medication as over-medication. Many, many symptoms are the same for both. There is no clear divide between hypo and hyper symptoms. You are hypo.
why my Ft4 remains elevated when it should be lower end of scale not upper.
Now, this is just wrong. Who told you that your FT4 should be at the lower end of the range? Your doctor? If so, your doctor is wrong. Your FT4 should be where you need it to be to give you enough T3 to make you well. Doesn't matter if it's over-range, that's not what is important. The important number is the FT3.
And if I have more than I should have (over range) surely taking more via levo is just going to exacerbate my symptoms! Surely that makes sense .
No, because it's not T4 causing your symptoms. As I said before: T4 is basically a storage hormone; it doesn't do much until it is converted into T3; it's T3 that causes symptoms when it's too high or too low. Yours, from what I can tell, is too low, which is what is causing your symptoms.
So, no. What you're saying does not make sense because you haven't understood that the important number is FT3 NOT FT4.
I’m sorry if I’m confusing you but I have spent all but the last two years completely stable on meds with no marked symptoms other than fatigue,
No, you're not confusing me. But, I think you are very confused. You keep talking about being stable, but being stable doesn't mean feeling well. And, I'm getting the impression that you have been blaming your not feeling well on Fibro, when actually the problem was under-medicated (with poor conversion) hypothyroidism. Am I making sense?
The thing about fibro is that there are no tests - blood or otherwise - to prove you have it. So, lazy doctors just 'diagnose' fibro rather than doing proper testing for other things, then they blame everything you complain about on fibro, when in actual fact, what you are suffering from is low T3 - i.e. hypothyroidism. Do you see what I mean? I am willing to bet that if you were able to get hold of some T3, and take that with your levo, your symptoms would gradually disappear. And that when your FT3 gets up near the top of the range, you will feel well and happy.
Yes both done 9 am both with no medication within 12 hours, medication is whatever the chemist has but is always being swapped brands, been on 125 since July/august 2020. Never going to be gluten free,.
Last dose levothyroxine should be 24 hours before test
work out which brand suits you best and then ALWAYS get that brand at each prescription
Get Coeliac blood test online £20, or get GP to test
Are you vegetarian or vegan?
First step is to get FULL thyroid and vitamins tested
About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid
Low vitamin levels are extremely common
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too
Have you had coeliac blood test done yet
If not, get this done before trialing strictly gluten free diet
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
Come back with new post once you get full results
Weight loss can be due to being under medicated and your TSH suggests you are under medicated.
Or poor gut function/gluten intolerance/coeliac can cause weight loss
Essential to test TSH, Ft4 and Ft3 together
All four vitamins need to be OPTIMAL for good conversion of Ft4 to Ft3
How much levothyroxine are you currently taking?
Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you currently taking
Are you on absolutely strictly gluten free diet already
I take vit d 1000ui and b12 spray all other vitamins are ok on testing
When was vitamin D, folate, ferritin and B12 last tested
Please add most recent results and ranges
Did you test ft3 when you did finger prick test? Have you got those results? Are you taking anything with biotin in, if so do you stop it a week before you do tests? Sorry for interrogation 😁 but the more info you give the clearer the picture and more likely the experts on here can help 😉
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s 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
Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
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
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
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
restartmed.com/hashimotos-g...
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.
hypothyroidmom.com/how-to-l...
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
