Newbie

[Stephd20]

Iv recently been put on levothyroxine at 50mg, i think it’s been causing me to have head pains everyday all day , Iv been taking it for about a month , I had another blood test and they upped my dose to 100mg a couple of days ago , apparently my tsh is 28, is this right? Is there anything else I can go on aside from levothyroxine as I have heard awful things about it.

[shaws Administrator]

50mcg of Levothyroxine (which is also called T4) is the usual starting dose and every six weeks we should get an increase of 25mcg.

For millions of people worldwide, levothyroxine also known as T4 is prescribed and an increase of 25mcg every six weeks until the TSH is 1 or lower. It is also inactive and has to convert to T3 and T3 is the Active thyroid hormone needed in all our T3 receptor cells.

If some people don't find a benefit (it can take some weeks to get to an optimum dose) they may have some T3 (liothyronine) added to the T4. Levothyroxine is an inactive hormone and has to convert to T3 and it is T3 that's needed in our millions of T3 receptor cells and brain and heart have the most.

All blood draw should be at the earliest, fasting (you can drink water) and don't take any thyroid hormones until afterwards.

[Stephd20 in reply to shaws]

Thank you for your reply! Much appreciated!

[Nanaedake]

Levothyroxine is the standard treatment for hypothyroidism. Most people do well on it. Some types of levothyroxine suit some people better than others. However, it's early days for you. You need to keep increasing dose by 25mcg and retesting until you reach a TSH of around 1 which is where most people feel well. One tip is to stick on the same brand of levo at every refill. Pharmacist will sometimes try to switch it with dose changes but there's no need to as you can take alternate doses. For example, if you need 125 mcgs daily, you can take 100 mcgs one day then 150 the next day to achieve the average dose of 125mcgs.

If you stick on one type of levo then it reduces variables so that if you continue to have symptoms when reached optimal dose you can switch levothyroxine brand to see if it makes a difference. If it doesn't then you need to rule out other factors.

Low vitamin levels often cause symptoms so check out B12, folate, ferritin a D vit D. With a TSH that high you very likely have low vitamin levels. Hypothyroidism causes low stomach acid and difficulty absorping vitamins from your food so best to ask GP to test them. You may need supplements. Or low vitamins can reveal a reason to investigate further towards symptom relief. Hope this helps.

[SlowDragon Administrator]

Welcome to the forum

Standard starter dose of levothyroxine is 50mcg

Bloods are typically retested 6-8 weeks after each dose increase

Normally dose is increased in 25mcg steps, but obviously with TSH still very high GP has increased up to 100mcg

Bloods should be retested 6-8 weeks later

Have you had thyroid antibodies tested and vitamin D, folate, ferritin and B12 levels too?

About 90% of primary hypothyroidism is caused by autoimmune thyroid disease diagnosed by high thyroid antibodies

Low vitamin levels are common when hypothyroid. Supplementing to improve low vitamin levels can help improve symptoms and helps tolerate increases in levothyroxine

Many people find different brands of levothyroxine are not interchangeable

Which brand of levothyroxine are you currently taking?

The aim of levothyroxine is to increase dose upwards until TSH is under 2, Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is)

Also important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

[Stephd20 in reply to SlowDragon]

Hiya Thank you for your reply

Haven’t had any of my vitamin levels tested only for the TSH

I’m not sure on the brand - just levothyroxine sodium

How long does it normally take to get a normal range of TSH? Or is that just depending on the person ?

Do you think I should take the vitamins along side the levothyroxine or consult my doctor first before taking anything extra atal?

[Nanaedake in reply to Stephd20]

You need to get vitamins tested before supplementing anything. You should only supplement those that are deficient or suboptimal. Don't take multivits as they're a waste of time for deficiencies. When you've obtained vitamin results post them on this forum and you will get good advice. If doctor won't do them then do a post to ask where other people get theirs tested if you're in the UK. There are reliable online labs. Read Thyroid UKs information on their website.

It can take a few months to settle on the optimal dose of levothyroxine. To some extent it depends how hypothyroid a person is to begin with but can be individual as some people may be able to increase dose faster than other depending on tolerance.

Vitamins can take 6 months or more to really gain the benefit as your body takes time to recuperate from deficiencies.

[SlowDragon Administrator in reply to Stephd20]

Essential to test vitamin levels FIRST

Only supplementing if necessary

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

verywellhealth.com/best-tim...

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)

[tuchwood]

My mother was having weird headaches too. She was initially on 50mcg of brand 1, no headaches. When her dose was increased to 75,she got 50 of brand 1 and 25 of brand 2. She then started to get weird headaches at the very top of her head? When her dose was increased to 100 she got brand 2, the headaches became much more frequent and very debilitating. GP couldn't figure it out. Then we realized that timing matched with her levo increases.

We reviewed what tablets she had had. Brand 1 was tevo, brand 2 was boots own. So she tried mine, brand 3 still headaches. So we asked the pharmacy to get her tevo only. The headaches disappeared.

Now we double check at pharmacy. A few weeks ago my sister picked up prescription. It wasn't checked for a few days. It was boots own again & immediately she started on them the headaches started again. So bad that she had to get the GP to issue another prescription. Apparently GP can't request specific brand on electronic prescription or so she said. However we spoke to boots and they agreed to get Teva again. Headaches disappeared again.

I know Teva is marmite brand either love or hate it but it just shows the effect a different brand can have. Unfortunately we haven't been able to work out what in the fillers caused the headaches, or if it is an interaction with other drugs.

Hope this helps and maybe you can try a different brand. The brand doesn't seem to effect me but I take t3 with a little t4

Ps - big thank you to all on this forum. Self treat now. My degree was in biochemistry and I have been having what I believed were hypothyroid symptoms for over 30yrs. No joy with GPs. TSH never more than borderline. Not got values. When I finally had private test both T4 & T3 were at bottom of range but TSH was only at 4. Temp was down in low 35's & having breathing problems. Apparently my own fault as overweight. GPs nurse told me a temp of 35.4 was perfectly normal, when I queried she said maybe a bit on low side. I felt that if I laid down at that point I would not wake up again. I had found this forum and it gave me the courage to go it alone. Still a long way to go but don't feel as though I am going to die. So thank you all.

[JAmanda]

I got headaches until I was taking a high enough dose. See dosing at 1.3.6 in Nice Guidelines. Can't add link here.

[Hashihouseman]

First of all levothyroxine IS NOT INACTIVE it directly affects many of the complex metabolic pathways and feedback loops controlling overall thyroid metabolism including conversion of itself to T3. In my experience and in established theory, t4 (levothyroxine) is absolutely essential but a devil to get the dosing right particularly if someone is sensitive to it. It directly affects stimulation of the pituitary to make TSH and some TSH itself is probably also essential even in thyroid hormone replaced patients..it is easy to suppress or allow to get too high with varying effects that we may feel or not. An overstimulated pituitary (seen by chronic high TSH) can also get other hormones out of balance e.g. prolactin, with knock effects and in my case ongoing cluster headaches and functionally low testosterone, which doesn’t show up in rudimentary blood hormone levels. It feels to me that levothyroxine can perturb the stability of things whether we are stable hypothyroid or stable euthyroid or stable hyperthyroid! I’m certain sudden changes to even temporary excess t4 causes me persistent headaches just as insufficient t4 cause a different kind of headache and hypothyroid fatigue. The answer - for me at least is to make changes in levothyroxine in small doses (half of a 25mcg pill) and minimise the size of each individual doses, so for example, I’m much better on 4 x 25mcg levothyroxine than on 1 x 100 (which isn’t what the healthy thyroid would ever deliver and can actually slow down or reduce cellular t3 levels leading to a weird set of symptoms like hypothyroid and hyperthyroid all mixed up. If 4 x levothyroxine dosing is too difficult even twice daily (well, nighttime actually seems best) can help but I would advocate 3 x as a minimum with slight increases to the overall amount needed to compensate for any reduced efficiency of absorption by doses that are not taken well away from fibrous foods and coffee (among other things) - dosing is pretty much all trial and error anyway so decide on a regime that suits and adjust the dose or add an extra dose depending on symptoms - but gradually and taking bi-monthly thyroid function tests of tsh t3 & t4. After a substantial baseline level of T4 replacement is established the changes from small adjustment can be felt within days not weeks because, as I said, T4 is by no means inactive! Levothyroxine is cheap as chips and much easier to get than liothyronine (t3) so do the best you can on that first and only go down the liothyronine replacement route if symptoms are not thoroughly resolved with split t4 dosing. Good luck.

[Cavapoochonowner]

Hi, I'm on block and replace for Graves.Ive just started on it again and my starting dose of levo is 25mcg.I will retest after about 6 weeks and my dose will go up to 50mcg if it's the same as last time.Eventually I will go back up to 100mcg.I don't know if my age makes a difference.I'm 55 with no other health problems.I do know that I get my migraines back when my t4 levels are either too high ir too low.They almost disappear when I'm stable.

[Kimkat]

I can’t tolerate Teva at all, it gives me 24/7 headache, I seem more suited to Mercury Pharma and request it every time I put my prescription in.