Hi - just wondering if anyone has wisdom regarding dosage. I had TSH last year of 41- diagnosed hypo and put on 25 mcg of eltroxin to start. Started to Hv terrible anxiety and insomnia once started the meds.
Within 5 wks I was down to TSH 8. I continued on meds at that dose but because side effects so strong they said I cld come off. Bloods five weeks after halting were TSH 2! My symptoms reduced since coming off the meds but never entirely went and gradually built up last 2 months.
Now 4 months later I felt hypo symptoms again- anxiety, insomnia, buzzing in Hands. TSH 63 today.
Gp prescribes eltroxin 25 again.
My worry is I will come down quickly again on a small dose and not sure where that’ll leave me if still having symptoms etc. (As before).
Btw I’m 50kg so thing abt 75 wld be the optimum dose of doing 1.6kg.
Anybody any suggestions, experiences or ideas?
Is it possible to do 6 wks on /6wks off?
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Anxiety and insomnia are hypo symptoms. You were probably started on too low a dose. And, starting on too low a dose can make you worse rather than better. Ask your doctor to raise your dose to 50 mcg.
Don't worry about the TSH. It's supposed to come down. But, whatever the level, it doesn't cause symptoms. It's the T3 that causes symptoms when its too high or too low. Does your doctor only test the TSH? That is totally inadequate - especially when the TSH gets lower. You need at least the FT4 tested - and preferably the FT3 as well.
I've said all this without knowing the extent of your thyroid knowledge. So, if I'm telling you something you already know, please forgive me. But, on the other hand, if you have no idea what I'm talking about, please don't hesitate to ask questions.
Hi- no thanks for your help. She did all those bloods but I can’t remember the values- she jst said they meant defo hypo. She is sending me thru the results tomorrow. I did. Not have any sleep or anxiety issues prior to the diagnosis (it was a chance diagnosis as bloods done for anaemia). The second I started the eltroxin within 2/3 days I cldnt sleep and the anxiety started. It was very strange.. within weeks I had this awful buzzing in my hands that was also waking me at night. My gp felt they wld try me off it as it may have been a thyroiditis.. and it looked like that when after another 5 weeks off meds my TSH had come down again. (And all other levels were in line)
Unfortunately my TSH has now increased again.. and my symptoms are as bad as they were jst before I came off the meds.. so I’m kinda fearful of going bck on meds.. will it jst increase these symptoms ?
I read so much abt people not finding right dose...
If I was on 50 wld it not mean I wld be in danger of hyper?
If I was on 50 wld it not mean I wld be in danger of hyper?
Good lord no! lol For one thing, it's physically impossible to become hyper when you started off hypo. Hypo means there's a problem with your thyroid. And, it's very, very rare to be able to fix that problem - or even find out what it is, unless you have high antibodies. Have you had your antibodies tested?
50 mcg levo is the usual starter dose, unless you are very young, very old or have a heart condition. It would not even make you over-medicated. Some people take as much as 200-300 mcg and are not hyper. I, myself, once took 200 mcg levo, plus 40 mcg T3, and I was still hypo. I know we're all different, but 50 mcg levo is not going to do you any harm.
The point of treatment with thyroid hormone replacement is to start on 50 mcg, retest after six weeks and increase the dose by 25 mcg. Repeat as necessary, until the TSH is 1 or under, and the FT4/3 are in the top third of the range and you feel well.
The thing with starting on too low a dose is that the pituitary senses that there is extra hormone in the blood, and reduces the output of TSH. This, in turn, reduces the output of the thyroid itself, so you end up with less hormone than you started with, and not only do symptoms increase, but new ones appear. People then believe that it is a problem with the levo. But, it isn't, it's just a problem with not taking enough.
So, unless you have a problem with one of the fillers in the tablet, it's very doubtful that levo caused your anxiety and insomnia. You just need to take more of it, that's all.
The problem with people not finding their right dose is not a problem with the person, nor with the thyroid hormone replacement. 99.9% of the time, it's a problem with the doctor keeping the person under-medicated, and not letting them experiment until they find the right dose.
Oh that’s interesting- so better to start with 50?
One thing I am miffed by is that when I came off meds.. and my numbers were perfect 5 weeks lAter, I always had some degree of those symptoms still- the anxiety and the insomnia. Any thoughts? Why did they not go?
Why didn't your symptoms go when you stopped the levo? Because it wasn't the levo causing them.
As to your 'perfect' numbers, I rather doubt they were perfect with a TSH of 2. 2 is too high. It means that your FT4/3 are too low. A doctor will say 'perfect' because the TSH is in-range. But, we hypo patients know better! So, if the numbers weren't really perfect, then it's not surprising the symptoms stayed.
I will try get a copy of all my bloods and see if I can track it from what u are saying.
This makes sense from the perspective of the pituitary kicking off and starting the more noticeable symptoms of my hypo- I had heavy periods, slight lack of energy previously but nothing that was very obvious to me as ‘hypo’ or that I felt needed to be checked out. I def don’t Hv all the classic hypo symptoms- I went back running recently and feel I’ve good energy levels. That was before the sleep got rly bad about 4 days ago tho!
So if they started me on 50 at the start I may not have had all these awful side effects for 6 months?!!
This makes sense from the perspective of the pituitary kicking off and starting the more noticeable symptoms of my hypo
That's not what I said. Although, depends what you mean by 'kicking off'. What it does is relax! lol It stops making so much TSH, and it's the lack of TSH that means your thyroid makes less thyroid hormone, and it's having less thyroid hormone that increases symptoms.
I def don’t Hv all the classic hypo symptoms
That doesn't mean anything. There are over 300 known hypo symptoms, but you don't have to have them all to qualify. Everyone one has their own personal symptom list. When I was diagnosed, my only symptom was weight gain.
So if they started me on 50 at the start I may not have had all these awful side effects for 6 months?!!
You haven't had side-effects. You've had hypo symptoms. But, they probably wouldn't have got so bad if you'd been started on 50 mcg, rather than 25.
Yes defo finding out symptoms wide ranging. In many of the resources I have read there is no reference to the buzzing I have in my hands and sometimes feet- and that is a very prominent symptom I have. I find the anxiety and low mood the most challenging.. very much hoping that has some improvement.
Just to note my antibodies were done and I recall 300...
I know they mentioned Hashimotos but don’t really understand the significance- is there anything I shd consider?
She did b12.. which was fine.. and vit D.. lower side of good.. 56.. don’t think she did cortisol. If cortisol was too high how is that addressed? Wld it decrease in the ranges of the TSH etc were within optimum limits?
U did explain the pituitary- I jst need the thyroid lingo 😀
She did b12.. which was fine.. and vit D.. lower side of good.. 56..
Never accept 'fine', 'ok' or any other opinion on your labs. You need the numbers: results and ranges. A doctor's opinion on nutrients has nothing to do with reality. For example, your vit D is not on the lower side of good, it's on the upper side of bad - although we do need the range to know for sure. But, looks to me like it's far too low.
If cortisol was too high how is that addressed?
Depends what time of day it's too high.
Wld it decrease in the ranges of the TSH etc were within optimum limits?
Not necessarily. Depends why it is too high. But, no point in speculating.
I know they mentioned Hashimotos but don’t really understand the significance- is there anything I shd consider?
A brief run-down of Hashi's:
OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.
Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:
"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.
The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."
After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!
However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.
But, there are things the patient can try for him/herself to help them feel a bit better:
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.
b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
Wow- many thanks for the details.. I will look into the supplements and I started gluten free today on the recommendation of a hypo friend. She said it got her consistently 1000 antibodies down by 300 in a matter of weeks and said she felt great on it. Worth a. Try!
Just to say by ‘keeping it suppressed’ u mean TSH under 1?? Is this by never reducing ur dose??
Going gluten-free will help if you are gluten-sensitive, as a lot of Hashi's people are. But, not everybody. It didn't do anything for me.
As for reducing the antibodies, that's a bit of a red herring, and not a reason to go gluten-free. The antibodies aren't doing you any harm - so, that's not why she felt great - and reducing them will not get rid of your Hashi's. Antibodies fluctuate constantly, and reduce by themselves with time. Frankly, the antibodies are the least of your problems!
No, by 'suppressed', I mean a TSH under 0.1.
With Hashi's, when you have a 'hyper' swing, you will probably need to reduce your dose from time to time, anyway, because there will be a lot of thyroid hormone in your blood. But, you will always go back to being hypo eventually, and need your full dose.
You keep your TSH suppressed by not allowing your doctor to dose by the TSH!
Oh, yes. How often and for how long is impossible to say. It differs from person to person. But, at some point you will have that experience, yes. I loved my hyper swings! Unfortunately, I haven't had one for 25 years!
Well, I can't speak for everyone, but I knew because I would suddenly have tons of energy, lose weight without trying and my hair would grow thick and lustrous - quite the opposite to the way I normally am!
Well, I wasn't on meds at that time. My last 'hyper' swing was when I was 50. I wasn't diagnosed until I was 55. But, I can't imagine you would want to stay on the same dose, you would probably feel rather over-medicated. But, we're all different. You'll have to find how it works for you.
Try and find out your actual B12 results, I couldn’t tolerate thyroid meds until I had been on b12 for a while. There are overlap symptoms with hypothyroidism, but tingling or pins and needles in hands and feet is quite common in b12 deficiency.
Levothyroxine doesn’t top up failing thyroid, it replaces it. So it’s important to start on high enough dose levothyroxine and get blood tests 6-8 weeks after each dose increase
Essential to test vitamin D, folate, ferritin and B12
These need to be at GOOD Levels
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
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
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
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)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Many thanks- I’m in Ireland and they seem pretty ok abt processing any tests I ask for. They may not continue to do it tho! And they’ve no problem with giving me copies of results.
Come back with new post once you get your previous actual results and ranges
Likely vitamins are low
Ideally you would do coeliac blood test BEFORE trialing strictly gluten free
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 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
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.
Everything you described was me 2 years ago then I got diagnosed with hashimotos and now take 75mg of Eltroxin at night before bed. Symptoms your describing stopped but it took 6 weeks to settle. If not been to an endocrinologist I would recommend. I was told my thyroid was border line so no treatment required for 5years. Glad I insisted on the referral as my issue was auto immune. Good luck x
Many people find it much better to take levothyroxine at bedtime
You don’t need to worry about breakfast/cup tea in morning
Often get better absorption at bedtime
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
With Hashimoto’s it’s important we take high enough dose to bring TSH under 1. Often needs to be suppressed
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