Posting for moral support 😔

At a TSH of 3.2, I started 25 MCG levo 12 days ago. I take it first thing in the morning, about 1 hour before my cup of tea.

I take my vitamin D and iron supplement at lunch time. I have not seen any relief yet from my symptoms of chronic pain and palpitations. I know you said it can take a while but shouldn't there be some relief, some feeling that something is at work. I am only on a trial after much insistence to my GP, and don't want to lose it just because that (if ) it did not make much difference to my symptoms at the end of 8 weeks when a retest is due too.

I am feeling very low because of my symptoms. It appears that I will never recover. Don't know how intermittently I get a day or two here and there when pains are less or palpitations/nervousness are less. Every such time I like to think I am improving, knowing that this is not really the case.

Thank you

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  • A starting dose of 25mcg is too low unless you are frail with a heart disease.

    It takes about six weeks for a new introductory dose to be absorbed with 25mcg increases every six weeks until you have no symptoms.

    I realise that the doctor was doing you a favour by prescribing, even at such a small dose, but he is covering himself as they've been directed in the UK not to prescribe until the TSH is 10 and we, the patients, realise they have no idea of the clinical symptoms we can have.

    You have my sympathy as I was in a similar situation when taking levothyroxine. No doctor or specialist diagnosed me as hypothyroid. It was, finally, a first aider and he proved right and my TSH was 100.

    I had even more clinical symptoms on levo that before being diagnosed and I wouldn't have thought that possible but it was.

    50mcg is a usual starting dose with 25mcg increments. It is unusal for doctors to prescribe levothyroxine with a TSH of 3+ in the UK but not elsewhere in the world.

    I think you doctor listened to your clinical symptoms and prescribed levo at the lowest dose thinking he may get into trouble for prescribing with your TSH result.

    You have to struggle along for the next few weeks (or increase your dose yourself) and remember to have the earliest appointment, fasting (you can drink water) and allow 24 hour gap between last dose of levo and test. Doctor should also test B12, Vit D, iron, ferritin and folate.

  • Thank you Shaws,

    I hope things work out. I have been tested for other things you mentioned. I believe I have corrected D and B12. My ferritin was 40 which doctors did not think was a problem (no surprise). But I am supplementing after learning here that it better be half way through the range. I am a man 45 age.

    Thank you for support.

  • There are fewer men with hypothyroidism than women and we have a few on here but this is a link which might be helpful too.

    hypothyroidmom.com/13-thing...

    I think the main problem with hypothyroidism is that it is 'assumed' that the patient is on sufficient levothyroxine (or other types of hormones for the thyroid gland) due only to the TSH being taken into account whereas we still have plenty of symptoms which are then treated as something other than the thyroid gland, so people end up with a myriad of prescriptions for their symptoms and still unwell.

  • p.s. I forgot to say that I finally got onto a dose of thyroid hormone replacements which has given me back my energy and relief of all symptoms. Unfortunately it wasn't an overnight result but I am happy now. I don't know why we have tobe put through all this trial and trouble due to stupid guidelines that doesn't allow doctors to use their initiative and co-operate with the patient.

  • Activelazy,

    Levothyroxine take 7-10 days to be absorbed before it starts working and it will take up to 6 weeks to feel the full impact of the dose. Symptoms can lag behind good biochemistry for several months so don't expect to feel much improvement on 25mcg after a few days.

  • Hi Clutter,

    Thank you for being there as always.

  • activelazy I hope you start to feel a bit better soon, but it's such a low dose you might need it increasing to 50mcg before starting to notice any improvement.

    Also, iron must be taken two hours away from any other supplements (four hours away from Levo) because it affects their absorption.

    Vit D needs to be taken with the fattiest meal of the day (because it is fat soluble). What about taking your Vit D with your evening meal? If it's a softgel that contains olive oil, you'd only need a yogurt or similar with full fat.

    Are you also taking D3's important cofactors K2-MK7 and magnesium?

  • Hi seaside Susie,

    Thank you. I take iron at least 4 hours away from levo. I m taking k2 MK7 with it. Yogurt is always there in my meal anyway, i love it. Not taking magnesium though.

  • Your iron needs to be away from any other medication or supplements by two hours, you said you took iron and Vit D at lunchtime.

    The yogurt will be enough for your Vit D if it is a softgel contain olive oil, but if it is a tablet, or doesn't contain any oil, you need to take your Vit D with the fattiest meal of the day.

    Important cofactors needed with D3 - vitamindcouncil.org/about-v... Magnesium is needed to help your body use the Vit D.

  • Thank you. I will separate them two now as you say. My D is in olive oil soft gel.

  • Hey SeasideSusie, I don't mean to hijack this post. But just based on what you said about iron... I've been taking my iron later in the evening at the same time as my vit D and Quercetin with a meal. Then I also usually take magnesium within 1-2 hours, or sometimes at the same time...

    I only started the iron recently. Is this a big issue to take them like this? I have to take supplements at every meal and I have to split my Levo and t3 and take them twice throughout the day. So I'm having a hard time timing all my supplements and meals. Should I aim to have iron taken by itself? Or should I at least move the vit D to an earlier meal in the day? Is it ok to take vit D an hour after Levo/t3?

    I'm not super worried about the Quercetin as I have to take 3 of those in a day anyway.

  • dang

    Iron - 4 hours away from thyroid meds and 2 hours away from other medication and supplements as it affects their absorption.

    Vit D - 4 hours away from thyroid meds. Take with fattiest meal of the day.

    Magnesium - 4 hours away from thyroid meds. Evening is best as it is calming and you don't want it relaxing you so much in the daytime that it makes you sleepy.

    Plenty of info out there, this is just some I've come across.

    feosol.com/iron-absorption/

    consumerlab.com/answers/Whi...

    newhope.com/supplements/bes...

    aplus.com/a/best-time-take-...

    labdoor.com/article/a-guide...

    Timing can be difficult, which is why I no longer split my dose of T3, I take it all at once with my Levo and fortunately it hasn't made any difference for me. Also, I couldn't tolerate iron supplements so I eat liver once a week and that has raised my ferritin - job done without having to worry about timing with medication or supplements.

  • That is tricky for me as I take my supplements with a meal and only once 8pm hits on any given day will I have had 4 hours since a dose and 2 hours from other supplements. This is the time when I take my d and iron with my last meal... if I take D for breakfast or lunch it's within 4 hours of my doses.

    I would have to eat another meal then at 10pm where I took the vit D and magnesium (4 meals a day is too much for me)

    I have to take certain supplements an hour after my Levo/T3 dose at 3-4pm when I eat so that would be too soon for the D...

    I think I'm kinda stuck here.

  • This clearly shows how difficult it can be to be at work for people suffering from thyroid illness.

  • Yea that's the case for sure. I'll probably have to get a vit D and ferritin test soon to see how they are affecting each other and adjust doses as needed. Sometimes I feel like a science experiment 😣. Every time I introduce a new supplement due to a new found deficiency it throws off the balance I previously found.

  • Ha ha

  • 25mcg is a miniscule dose and 12 days far too soon to hope for a change

    normal starter dose in someone without heart risk etc is 50mcg but it still can take 6 weeks to get into the system

    more important has

    b12

    folate

    vit d been checked

  • Yes really, b12 was deficient but now well corrected I believe. So is D. While b12 reading has no meaning now, D is 100. I am working on ferritin. It was 40 about a month ago. Folate was normal. It was not towards lower end of normal. It was more than half in the range.

    Thank you

  • just to putvit out there I was diagnosed about 30 years ago and prescribed NDT by my GP who was taking the same due to a prolonged strike I moved over to Levo and started on 25 as everyone was then so a big shock when I joined the forum to hear the starting dose was 50! So may be older doctors are still behind in the changes that have been made over the years. I know that's not helpful but it may explain why

  • Thank you silverfox7

  • With a near normal TSH what was the indication you needed Levothyroxine? Low T4 low T3 ??

    Contrary to other opinions here 25 mcg Levo may be the best place to start, irrespective of age etc.

    More than that any treatment should be based on more comprehensive and frequent blood tests and thats the thing to get NHS support for....

    Knowing our personal hormone set points is a vital piece of the jigsaw particularly where TSH levels arent so questionable. trying to work out what that was before treatment after treatment has started is potentially impossible- seems that the first step in understanding and diagnosing is missing.......

    ?

  • Hashihouseman,

    Thank you for your reply. My FT3 and FT4 were near 75% in the range recently.

    I had subacute thyroiditis 18 months ago. I think you meant to say 'before illness' rather than 'before treatment'.

    Knowing the level of TSH before 'illness'. Am I right? If yes, it was 1.08. After learning in this forum, I decided that it's important for me to see how I would feel if my TSH dropped back to 1. This also being the figure which most people feel good at apparently.

    I don't know what my FT3 and FT4 were before illness. So, my current aim is to achieve TSH of 1. Whether it will help me or not, I don't know.

  • Actually i did mean before treatment, it would be a very wise or neurotic person to check thyroid profiles before any hint of illness, i wish i had!

    Thorough blood work before treatment seems essential to decide on treatment and record a baseline for before and after since after usually means increasingly thorough blood tests if symptoms are not resolving and it would be at least interesting to see how they change. I was diagnosed soley on basis of TSH and that wasn't helpful then or since!

    All the research i have read gives healthy thyriod people as having TSH nearer 2 than 1....

    But we are all different, especially when we have a health issue or are under treatment.

    But your free hormone levels are all in range then? If so why not leave well alone, TSH may be a slippery red herring.....

  • Thank you. I know what you mean now by before and after. My FT3 and FT4 were done not so long ago before i started levo 12 days ago. Actually had these done many times in last one year. So, kind of know how they are moving. In the latest one GP did ask for TSH, FT3 and FT4 but lab failed to test them because TSH was normal. Usual story. But I know where they were just a few weeks ago. This can't be altered now anyway as i have started levo. But doc is definitely going to get all three done this time in a few weeks time. Let's see.😖

  • Hashihouseman

    If you look at the post I made in the last hour :

    healthunlocked.com/thyroidu...

    and follow the links I gave to the graph and the associated paper you'll see that the distribution of TSH in healthy people is very skewed. Median TSH is nearer 1 than 2.

  • Thanks! What a brilliant link. I had been using a few bits of research with much smaller cohorts which were indicating nearer 2 than 1 But the background to the article you linked, the Norwegian study, was of thousands of people so the healthy thyroid cohort is much much bigger.

    looking at the data presented in the Norwegian study the median TSH for healthy thyroid men was 1.4 - 1.8 rising from age 40 . Same for women but women but 1.3 - 1.7

    I wonder how the Australian article interpreted the results, am I missing something ?

  • Sorry, are you referring to the second reference from the bottom of the graph? It is also in the internet archive.

    web.archive.org/web/2004062...

    Notice the date for the above link - it isn't current. It is dated March 2001.

  • This one from your linked post healthunlocked.com/api/redi...

    Table 3

  • Humanbean,

    I did use this study as part of my case to the doctors to get a trial at TSH of 3.2. I prepared a detailed case of my history and used various inputs like this.

    I agree it's a great explanation.

    Thank you

  • You will recover! It's still very new, it took me a year to find a good dose for myself and even then I'm still not 100%.

    One thing I need to tell you is to take your iron and vit D much later in the day. Iron interferes with the absorption of levothyroxine, I make sure to take mine at the last meal of the day. Also take 1000mcg of vit C along with your iron to aid in absorption since iron is hard to absorb.

    25 mcg could also be much too little, for most people it's a starter dose, normally only affective if you're incredibly sensitive to Levo, most people need 100+ mcg some people need to take as much as 300mcg. I was started at 50 then raised to 100 and only then did I start to feel better.

    Keep in mind Levo stores in your body for 7 days and your body uses it as it needs it. So for that reason alone it takes 2 weeks just to start really feeling the effects of a new dose, again this dose could be too small for you to really notice much. My sister has a bigger dose than you and her TSH was much lower than yours when she was given her prescription.

    This may have already been asked but do you have other test results? FT4 and FT3? Any vitamin results? B12, vit D, ferritin, folate?

    How much iron and D do you take?

  • Hi Dang,

    Thank you for an encouraging response. Unfortunately, FT3 and FT4 were not done this time (March). However, they were about 75% in the range in January, when TSH was 2.7. I am working towards a goal of TSH 1 or so. It was 1.08 little before I fell ill 18 months ago. Please see my post titled Thyroid function test - trend analysis.

    My D deficiency has been corrected. My b12 deficiency has also been corrected. My ferritin is a bit low in the normal range (40) so i am trying to raise it. I am a carrier of thalassemia so have to be extra careful with iron. I am currently taking 1 tablet of ferrous sulfate 200 mg per day.

    My current D is about 100. It was 95 recently. I had been taking 5000iu every day for last about 2 months as it had dropped back to 54. I am now thinking of taking slightly less than 5000 iu for some time. Perhaps 5000 iu alternate days. Can I ask what was your sister's TSH when she was started on levo? I am sure her ft3 would have been much lower than mine. Mine was 5.3 (max 6.8) in January 17. Amazingly, it was still 5.1 one year ago when TSH was 6.3.

    My TSH behaves in response to my FT4 (see my post i mentioned). Ft3 hardly ever changes.

    I am no doubt tired of this illness now, whatever it is?

    Thank you

  • It's normal for FT3 to hardly change. In fact mine remained even with each dose increase, until all of a sudden it dropped as my FT4 went over range. I had to start taking T3 to get it up in range and feel good.

    I checked your previous post, all I can tell you is my FT4 also went up as TSH went down. My TSH was 20 before treatment, to get at TSH of 1 brought my FT4 over range. And I was feeling hyper and hypo at the same time. That was at a dose of 100, they lowered me to 75, TSH went up to 3.5 and FT4 only went down by 0.1, now I'm on 10mcg T3 and 100 T4 this balances out my results and I feel more steady. My FT3 is high in the range, FT4 is lower (expected on T3), and TSH is almost suppressed now at 0.2 (happens on T3).

    D of 100 is getting up there, you definitely want to make sure you don't go over range there, I'm still learning to rectify my own D problems so I don't feel I'm the right person to advise you there.

    My sister's TSH was I think 1.7 or so, we're in Germany where they aim for 1, I believe now she's around 1.2 and the docs are happy keeping her at 50mcg Levo. I don't remember her FTs but I can look at her results and find out if you're interested.

    Achieving TSH of 1 is a good starting point. From there you can gauge how you feel, if you still have problems you should get FT3 and FT4 tested to see what's going on, that's how I found out about my high FT4, I didn't feel well after some time even with TSH of 1 as T4 was pooling in my blood. I'm not sure what medication or dose you need, but many of us go through periods of switching doses, brands, trying T3 or NDT, until we finally find what works.

    Keep in mind if you have Hashimotos your TSH will fluctuate anyway, and it'll be pretty impossible to have a steady "correct" dosage while your thyroid still has some activity.

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