How much change is possible after just a few doses of L- thyroxine?

[LindyMc]

The GP suspected altho I had been subclinical hypothyroid for some years she wanted it checked again before making a decision. When it came back somewhat more likely she asked me if I had any symptoms. I believe we agreed on one or maybe 2 things ( can't remember what now) but she decided to check for antibodies for auto immune as I had had PMR diagnosed last year which appeared to have resolved in May of this year. Anyway after this conversation I reviewed a fuller list of possible symptoms including others which Dr and I had not discussed. From this I realised I was becoming seriously cold much of the time, had muscle and joint pain, togerber with poor concentration ie found the mere thought of tackling a large task impossible and even smaller ones difficult to complete due getting distracted by other tasks half way through. With the cold by early September I was sometimes forced to go to bed fully clothed for half an hour or so with several layers and 2 duvets as I could not get warm. My shoulder joints were so sore that despite shiatsu massage I had to give up resistance classes ( as far as I am concerned essential for older women to compensate muscle/bone loss) initially for a month. This all reaches a peak in mid September and has slowly improved. As a result of a patient review with phone consultation with an endocrinologist by the GP, a system well used in Mid Wales as we are so rural and have no direct contact with a local hospital, I was finally offered a choice earlier this week of either continuing as subclinical or starting L - thyroxine. Needless to say I was no longer listed as symptom free and so took the later course. Apologies for the long preamble but since starting L - thyroxine I have not felt cold, I am gently easing myself back into resistance classes with very light weights with no discomfort so far, whereas last week that would have been impossible, my concentration is back to normal and I can hold more than one thought at a time and am completing tasks I set myself. I now know life was very flat as in the last few days I have really enjoyed meeting up with people and its as if I am back living again. Could this possible be L- thyroxine or is that just too miraculous?

[Sleepman]

I think the pmr steroid lowers your TSH so may may make blood test make your thyroid look more normal. Mum is 25 years on levo and has had pmr issues recently.Prednisone? I think pmr with Mum was not enough thyroid hormone.

Take it steady and do not over do it ... it is easier said than ...

I remember the desperation to feel better, the kind wise people on here have really helped me.

It takes a few months to get to right dose and for your body to recover from underactive thyroid.

I am 2 years on and remember warmth coming back quite quick in my legs/feet in bed.

Your temperature under tongue as you wake in morning is a good measure. Mine lifted from 36 to say 36.6 over many weeks.

[LindyMc in reply to Sleepman]

Thabka for that. Stopped pred in May having had a really straightforward taper. The query over hypothyroidism was not raised until July.

[Sleepman]

Steroids act fast.Thyroid hormone is very slow generally. It takes a week for 50% of your tablet to work. Levo is very slow.

What dose are you on? Would expect 25 or 50 and you will end up on 75 to a 100 mg typically.

Have you got any blood test results for thyroid. Antibody TPO test?

Wisdom on here is that vit D and B12 folate and ferritin are very important for thyroid sufferers.

This forum generally has thyroid strugglers rather than 90% who are simpler and easier.

[LindyMc in reply to Sleepman]

Thankyou again (correctly typed this time ).As you see above, pred not an issue. Have just received BetterYou mouth sprays on all the above. Gather this is best as low acid stomach in hypothyroid reduces all absorption.

[PurpleNails Administrator]

Were you started on 25mcg? Have you got a repeat test schedule to follow up? Usually 6 - 8 weeks.

Lots of people describe an initial improvement which can often level off, as by week 6-8 it might have lulled & you’d be due an increase & more improvements emerge as the levels are gradually increased.

It can take this time as the TSH adjusts to new thyroid levels & you find the right balance. Plus if nutrients are affected or your levels have been too low for a prolonged time it takes time to repair. Sometimes doctors think if someone is subclinical they won’t need increases, but often they do need to gradually increase.

You’re on the right track now.

[LindyMc in reply to PurpleNails]

That was what I was thinking, nice high gentle come down! Yes am on 25mg but as NHS don't do T3 regularly without some very good reason, having read that T4 does not always move smoothly to T3 which can make you feel rubbish, I am going private. Also endo suggested 50mg with a 4 month wait for blood tests inc vit/ min but given my age and endo's suggestion to watch out for heart palpitation seems negligent in the extreme as this could mean hyperT overrun and could be dangerous as I have a history of AF which disappeared on the exit of long covid nearly 2 years ago and he was aware of this . Additionally, I have a history of being a hyper-responder to a number of drugs in the past, so was not looking chance it!

[PurpleNails Administrator in reply to LindyMc]

Doctors seem to protract the length of testing, I suppose it spreads out managing your treatment but that’s not beneficial to you. Going too fast is counter productive too, the body system needs time to adjust.

I think I’d want nutrients tested now as some don’t tolerate levo well without optimal levels. Optimal levels can help good conversion. There may be a weak argument it’s not necessary to test FT3 until FT4 is in top 3rd of range first but it really is ideal to gain a full picture.

Lots use private testing to monitor treatment, or to fill in gaps where GP/Lab will not test.

Do you have a way to monitor your heart rate, eg Fitbit or tracker. I find resting heart rate well correlated to thyroid levels, it’s a guide although other factors can be involved. Before the reliance on blood test numbers drs would go by symptoms & clinical signs such as pulse pressure.

[LindyMc in reply to PurpleNails]

Interesting the last paragraph! Have not seen a Dr in person for 10 months and the Hypothyroid was only raised as in issue in July. But I do have a Fitbit which they are aware of. My regular resting pulse is around 56/7 and did drop a little in August. But in the first 10 days of September it jumped to (for me an all time high) of 66 and for the first time every I had palpitations. I read somewhere that in the beginning you can switch from hypo to hyper as shown by that sort of response? But it then dropped back down again and is a steady 55.

[SlowDragon Administrator]

You will need blood test 6-8 weeks after starting on Levo

What dose have you started on

Yes you can notice improvements pretty quickly, but the longer you are on starter dose, you may see symptoms slowly returning…..indicative of being ready for next increase

What were your blood results BEFORE starting on Levo

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

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease and as we get older

[LindyMc in reply to SlowDragon]

Hi Slow dragon

Started levo on Oct 8th. First lot of exploratory bloods 28th Aug. TSH bloods 10.5mu/L taken at 9.30. Yes I have pushed Dr to accept that this might well have been higher at 9am ( she says this is not a thing in NHS but I keep on saying, it is everywhere else!) and T4 16.9pmol/L. Then redone to check antibodies on 11th Sept where TPO was 43iu/mL, TSH 9.42 pmol/L, Free T4 16.2., [ taken at 10.45], mentioned again in review that we should be aware that TSH was likely to be higher. Endo. said I was still subclinical, but if I pushed start me on 50mg for 4 months. See above for my thoughts on that! As to bloods, private bloods will be done at 6.30am after 8 hour fast with evo taken at 6.30am previous day as I have been told early morning. NHS PIL (patient information leaflet) instructions say leave 30/60 min after Levo for breakfast and other meds. But I follow your ideas as minimum. As I am on modified AIP (autoimmune protocol) paleo diet and am in the exclusion phase for another week before slow reintroduction of restricted items, I find it better to follow TRE of 18/6 i.e. 2 meals starting at 1pm and 5.30pm so meds/ supplements taken at these 2 times as despite having a BMI of 22.5, I have rubbish insulin resistance - don't ask, I don't get it either. Fasting blood glucose not optimal if I eat after 7pm or often if my sleep poor or .....??? All advised supplements have just arrived, as advised by you guys, from BetterYou mouth sprays for better absorption. Think that's it.

[Astrido]

I was surprised by how quickly I felt better after starting levo. Eg within 2 days I felt a massive increase in energy. Was expecting it to take much longer. But as others say above, this then levelled off and it took a while to find the right dose. I have to put dates in diary for blood tests once a quarter to keep tabs on things. It is too easy to let the low energy creep back in and then that makes it much harder to organise appointments and treatment.

[serenfach]

You were not "sub clinical".!! I hate it when they say this! Anything over 10 in the UK is considered clinical. It is 5 in the USA! So, yes, your body was crying out for some help, and has accepted the 25mg gratefully. The problem here is that that 25mg will switch off any thyroid hormone you were producing, so dont be surprised if you get a dip in feeling better in a few weeks. Then they may put you up to 50mg depending on the blood results. I am an old lady (the lady bit as in female, but where doctors are concerned, I am not usually lady like!) in West Wales, so know the difficulty in getting to see anyone in the medical profession, but they should have followed protocol and tested your T3 before any treatment.

I clearly remember when I started taking T3 - the next day I felt like I had removed a wet cold overcoat and walked into the sun!

I am impressed with the exercise - I chuck sheep around so I suppose it is the same sort of thing! I hope you continue to feel better and better, find the level that suits you and go from strength to strength!

[LindyMc]

Thanks Serenfach, I am from Rhayader! Was told they don't do T3 as its generally unnecessary!I gather the general gist of the conversation was not enough symptoms subclinical regardless! Cost saving as with bigger dose leave for 4 months!

[serenfach]

That is like saying "we dont usually give insulin as it is generally unnecessary". If your body needs it, it is necessary!

I think the next step would be to do a private blood test showing TSH, T4 and T3, with all the vits, iron etc. You may be able to see straight away what you need more of and what you may need to work on. Sending a cwtch.

[LindyMc]

Have booked privately for all you sugguest in 6 weeks having told lovely GP what I thougb of the endo ! In fact when it was decided to look at the antibodies she also said she would talk to the endo and said no doubt I would go and form a opinion of what I thought once the antibody test was reported. (She knows me of old as she has helped me navigate my own and my late partners multiple issues for sometime!) As I am feeling really good on the 25 mg I think that would be a good time. Also have stock up on BetterYou mouth sprays on all the items suggested so 6 weeks will Indicate if I am having enough but won't be too disastrous if I am overdoing it tad!