Levothyroxine - don't know which way to turn next?

[Princesspea]

Hi everyone,

I have been on Levo now since Aug last year and dose has been increased in that time. As the doses have gone up I definitely felt 'physically' better to start with, although the anxiety/low moods/mood swings didn't get better and at times seemed a bit worse. When I increased to 175mcg all initially seemed ok, not great, but ok. However after 6 weeks I felt awful, like I had flu but without the cold bit. I felt like I was almost back to square one. I'm under Dr S so a week before I was due to see him I dropped back down to 150 thinking maybe I was taking too much. When I saw Dr S he said I wasn't showing any signs of being hyper/toxic. We discussed treatment options and agreed I would go back up to 175 then try 200mcg and if that didn't work try something else. I was happy with this. In the 5 days since I went back up to 175 I have felt myself getting slower and stiffer again. Last night I decided to go up to 200. (I was supposed to do 175 for a few weeks but I was on it previously. I know some of u may think I'm mad but my body seems to tolerate reasonably quick increases ok). I will see how 200 is but I can't help thinking that if Levo was going to work for me surely I would be feeling at least a bit better by now? Or is it just I need quite a bit more yet? How high do I go with doseages before I admit defeat with T4 only?

Any and all advice gratefully received. Thank u, u are all wonderful.

Gail x

[shaws]

Most times we get frustrated when whatever we try doesn't seem to do the trick.

Dr S (not only him) believes that we are given too low a dose of meds and that if you get to a high enough dose it will do the trick. Taking into consideration of cost as well. Also, if you do feel better on levo your GP will not have a problem prescribing which would be different if it was T3 alone or NDT.

If you feel worse or not benefiting from the increase in levo, at least you know the possibility of an alternative is available although, again GP's do not always prescribe on a 'named patient basis' so we have to fund this ourselves.

PS - before the TSH came in people were given between 200 and 400mcg but that was NDT as levo hadn't been invented.

[Princesspea in reply to shaws]

Shaws

Thank you for your reply. Should I still be feeling rotten though even on 175mcg? I genuinely feel like I'm headed for a nervous breakdown and some days can hardly move.

You have obviously never met my GP!! I reckon even I I suddenly dropped to 8 stone and could run marathons all day long on thyroxine they still wouldn't prescribe it for me!! Lol. But that's another battle.

I know, and am very glad, that there are other treatment options available. I just dot want to jump too early, until I have fully bottomed out the use of thyroxine, however at the moment every day is a nightmare, I just don't know what to do.

Thank you.

Gail x

[RedApple in reply to Princesspea]

Have you got any recent thyroid test results you can post for us? They might give a clue as to what was happening to the 175mcg of levo you were taking. e.g. whether or not it's getting absorbed, is or is not being converted into T3.

[Princesspea in reply to RedApple]

Hi, thank you, please see new reply below. Gail

[shaws in reply to Princesspea]

I must admit I was even more unwell on levo than before diagnosis. It was a relief to stop it.

If you post your most recent thyroid gland blood test results complete with the ranges, someone will comment and try to assist.

[Princesspea in reply to shaws]

Hi, thank you, please see new reply below. Gail

[shaws in reply to Princesspea]

Believe me (I know you will) when I was finally diagnosed and taking levothyroxine life was unbearable and I had the most severe palpitations during the night and husband had to get ice-cold towels from freezer to wrap around my neck (not to choke me of course😊. The cardiologist was puzzled as I had many halters round neck at night to record palpitations and he was contemplating putting an implant in heart to 'see what was going on' as he couldn't figure out what was happening.

Just at that point T3 was added to T4 and palps instantly resolved. I then went onto T3 only and that's what I take now and it is prescribed.

T3 had been removed due to its cost becoming intolerable but if an Endocrinologist prescribes the patient will receive it.

The very original life-saver for those who were hypo from 1892 was NDT (that too has been removed). I just don't know why the people who make these decisions chose to be endocrinologists because they will probably offer anti-d's instead of checking our Free T4 and Free T3s. Both should be in the upper part of the ranges.

I must also state I'm not medically qualified and I think the majority on this forum go by their own experiences (bad or good).

To feel constantly unwell is awful and many people do suffer and not everyone has online facilities.

I hope you can resolve your symptoms but I found that GPs have little knowledge or know how to improve their hypo patients' lives.

[shezz]

Like u I'm on levo but to be honest never realised before abouranxsious I now rhink it is to do with my thyriosd

[Jackie]

Hi Have you had a Free T3 test? It sounds as if you would benefit from some T3 in addition to T4 or a change to NDT, armour etc. It depends on your Free T3 result.I have my T3 on a script ( GP ) under an endo. It is expensive other wise.

Best wishes,

Jackie

[Princesspea in reply to Jackie]

Hi, thank you for all your replies, since you have all posted a similar reply I will just keep it to one response! I dont have any recent test results, my GP refuses to test. I think I am going to have to bite the bullet and pay for them privately.

Jackie, do you think I should persevere with a higher dose of T4 first and see if that helps (my dose increases to 200mcg in 2 weeks time) or is it unlikely to get any better? Or does that depend on test results?

Thank you all again, sorry if I am repeating myself with some of the questions but I am just trying to work out my next step.

Gail

[Jackie in reply to Princesspea]

Hi Gill, I expect in the short time it is worth giving it a try.However if your body is not converting the T4 to FT3, it may just complicate things. I use Blue Horizon for TSH , T4 and Free T3 test. My NHS Lab here will not test for FT3 any longer. My Endo and I consider the FT3 test essential. If you use Blue Horizon thyroiduk.org.uk/tuk/te or their main site on line, then quote TUK 10 for a discount of £ 10 can be £50 if a lot of tests, Then the intermediate test from them ( all 3 ) costs £61. As they use the same Labs ( TDL ) as all the private hospitals they are well known for treatment for whoever you show them to.They send the kit straight out, finger prick or syringe, both easy but for syringe you need some one to take your blood ( details on line). If you have it done straight always ( before taking levo on that day,Then results to you as soon as they receive it,1 to 2 working day. So, you can do it all in a week.Also make sure your vit D ( hormonal) is OK, there are two different ones, either will do. Blue Horizon do the best test but £55, the one at City Hospital ( see site) takes a week and is the standard NHS one. If D low you will need the GP to do corrected calcium before treating with D, then repeat tests, 3 monthly and increases in D until stable.other tests but D most important of them as it is so common to effect the thyroid.If you see Dr. S is he not testing the TSH, T4 and Free T3,? If so it would be about the same price or may be dearer.He did not use to test the other relevant things but may do.Most endos prefer T4 and then adding T3 and if that is no good Armour etc, and then if armour, Erfa no good they try just T3 but not ideal, last resort. I have very low FT3 so take armour ( allergic to levo) and T3 , 20mcg ( good endo) but it does make my already low TSH even lower. For this reason a lot of GP`s are against treating with T3 depends on numbers!!!It does take a long time to be stable. with frequent tests and alterations in treatment. I have been stable for a log time now.,I have autoimmune Hypo Hashimotos.

I hope that helps, get back to me if you need to.

Jackie

[Princesspea]

Thank you Jackie, I very much appreciate your help. I think tests is the way to go. I saw Dr S for the third time last Sunday. He has never mentioned getting tests done and purely adjusts on my symptoms at the moment. He has a list of the other supplements I am taking but has not advised on any of it. We did discuss T3, NDT etc and he is not against these, I just felt the need to 'cover all the bases as I go round' if that makes sense, but testing would obviously sort this out more quickly I would assume?

From the (only) set of tests my GP carried out I had low B12 and low vit D (but GP advised they did not treat low vit D!). I now get 3 monthly B12 injections but supplement with high doseage sublinguinal also as i was very low to start with but despite this the GP deemed the cluster injections at the start to be unnecessary. I also take 5000ui of vit D sublingually. On top of this I take multivitamin, calcium, vit c and a b complex. I was thinking iron and magnesium may be a good idea also.

Perhaps an endo would be a good idea if I can persuade my GP to refer. I am one of these people where my results sit bang in the middle of 'normal' but I feel awful and have done for years. I had a CFS diagnosis until I started looking into it myself. Have an appointment with the lead GP who is blocking any treatement tomorrow but I dont expect to get anywhere so will change GP if necessary. Re endo, it did cross my mind to try and get an appointment with Dr Toft as he practices privately at a hospital near me but I cant make up my mind from what I have read if he is anti low TSH or pro it!

Gail

[Jackie in reply to Princesspea]

Hi Gail,I saw an endo after seeing a private thyroid only then was I I was tested and treated for all the things often associated with thyroid disease.D ( hormonal ) does need treating if low, endo. Also you need tests for corrected calcium first and may be not take calcium, calcium must always be in range, D effects it.There is a good test for magnesium, tiny range, so best in food or after test under medical supervision. I have to take it ( heart) as it is an electrolyte , also a tiny range I have it tested weekly. In food it is very safe and there is lots of food with it in, see the WEB. The best multi vitamin and mineral is important.If you ask to see an endo, decide who you want to see fist, very important as like everything , very good and very bad. Do not rely on the GP`s choice.A good GP will have a vast knowledge of all the endocrine system and therefore the body. Also will consider how you feel and not just test results, although test results do help.

If you want to reply to someone you need to click on "reply to this", otherwise answers only found by trawling.,so, often missed.

Best wishes,

Jackie

[Princesspea in reply to Jackie]

Sorry dear, I thought I had hit reply to, apologies.

So is it a private endo you saw and your GP listens to their recommendations?

Gail

[Jackie in reply to Princesspea]

Hi Gail,

Yes, you have a referral to an endo just like to any consultant GP more likely to refer you if you are paying and not the practice! You can see one any where at all.They write to GP and tell them what to prescribe and tests to do. if you are paying for your self, they should request tests and everything from the GP ,provided you ask. I see a lot of different consultants and actually they always ask if I am paying or do I want the GP to do whatever Blood . tests are especially expensive,so never have those done at a private hospital! I use Blue Horizon for thyroid as my NHS will no longer do FT3 but GP does my others, every week actually.Consultations are not expensive , unless a Prof., laid down charges up to £150, first visit often more expensive.Many charge less eg. my endo charges £90 for follow up consultations.

Jackie

[Princesspea in reply to Jackie]

Jackie, sorry to keep asking but your information is helping me greatly, thank you.

So, I live in Scotland, technically then I could have a referral to one anywhere in Scotland or even in England?

Gail

[Jackie in reply to Princesspea]

Hi Gail, No Problem, Any where in UK but first do make sure they are very good.

Best wishes,

Jackie

[Princesspea in reply to Jackie]

Jackie

Could you PM me details of yours please?

Thank you

Gail

[Jackie in reply to Princesspea]

Yes,

Jackie

[Heloise]

How can he refuse to test you when you are on a drug that will affect your blood and rise or fall to your benefit or detriment? It's odd that the blood tests seem to be the ONLY thing they rely on (and not your symptoms) and yet refuse to take them. I think you should insist on your tests, especially when changing your dose and especially if your symptoms worsen. If you continue to worsen, ask for the Reverse T3. Your T4 will turn into T3 or RT3 and reverse T3 blocks receptors for T3 which will produce symptoms since T3 is the active part.

[Princesspea in reply to Heloise]

Thank you. He is refusing to test me as my results came back 'normal' so as far as he is concerned I do not have a thyroid problem. I have an appointment tomorrow to speak with him about it. I dont think I will get very far though.

I will take on board what you have said about the T3/RT3, thank you.

[Heloise in reply to Princesspea]

Good luck tomorrow, Do you think he will schedule a blood test? The thing is that it takes your med about three weeks to stabelize so your blood tests are not going to accurately give you the information you need since you have changed your doses. Keep in mind how your T4 works in the body:

The thyroid hormones, triiodothyronine (T3) and thyroxine (T4), are tyrosine-based hormones produced by the thyroid gland that are primarily responsible for regulation of metabolism. Iodine is necessary for the production of T3 and T4. A deficiency of iodine leads to decreased production of T3 and T4, enlarges the thyroid tissue and will cause the disease known as goitre. The major form of thyroid hormone in the blood is thyroxine (T4), which has a longer half-life than T3. The ratio of T4 to T3 released into the blood is roughly 20 to 1. T4 is converted to the active T3 (three to four times more potent than T4) within cells by deiodinases (5'-iodinase). These are further processed by decarboxylation and deiodination to produce iodothyronamine (T1a) and thyronamine (T0a). All three isoforms of the deiodinases are selenium-containing enzymes, thus dietary selenium is essential for T3 production.

[Princesspea in reply to Heloise]

Thank you. I dont think he will end up having a choice because even if he chooses not to schedule them to actually check thyroid function, surely he will have to schedule them through a duty of care to make sure I am not doing myself any damage (from his point of view, I know I am not). Even if thats the only way I can get him to do them. I realised only recently that I thought they had done the antibody test but they havent even bothered doing that, it was the B12 antibody one they did (only one of the two but thats a different forum! lol). I was taking 175 for 6 weeks then droopped down to 150 for a week before I saw Dr S as I thought I was maybe taking too much since I still felt rotten, and have been back up to 175 for a week, will I still need the 3 weeks settling time? If so thats not a problem, if he agrees to schedule them I will just put off going to the nurse for a few weeks, will probably take me that long to get an appointment for bloods anyway!

Thank you for that, its a great help. Will have to read it a few times to get my head round it right enough!! But very helpful, thank you.

Gail

[Heloise in reply to Princesspea]

Gail, I'm not sure why you are seeing both doctors but it can only help, I guess. It's so difficult in the UK. And I know it seems the more you learn, the less you know. I think it's important to know whether you have autoimmune which means antibodies or if it is due to deficiencies of iodine, selenium, B12, ferritin and folate which most people agree are important and especially vitamin D which you most probably are deficient. If I were you I would go ahead and take D3 even without a test.

Then there are the adrenal issues which interact with thyroid. Your adrenals may try to compensate for lack of metabolism and rev up your cortisol and make you feel wired.

So a saliva test might help you determine that. Some people use Blue Horizon if they resort to doing their own blood tests.

It is hard to keep track of everything, Gail, I guess that's why doctors don't want to bother. I hope you keep endeavoring to learn about your own symptoms and it is exciting that so much information is now available to us peons, lol, and the possibility of getting help.....one way or another.

[Princesspea in reply to Heloise]

I dont know if you are based in the UK and know how it works dear but basically I see Dr S because my GP refuses to test/treat/acknowledge my thyroid problem as my first test came back in the 'normal NHS ranges' although in reality my TSH is slightly high and FT4 low normal. So because of that I researched a link between CFS and thyroid as I have a family history, and found this site and TUK, got a recommendation for Dr S (amongst others) and felt I was left with no option but to pay to go and see him. I continue to see my GP because in the UK I have to see him for everything else on the NHS. They are being awkward with me because I am choosing to be treated privately for thyroid, which they dont think I have, and its making seeing them for anything else very difficult as I get quite an attitude from them (such as sick lines for work at the moment as my symptoms are quite bad). Plus it would be a lot easier if my GP was on side for testing etc although I will pay if I have to. I hope this makes sense.

From the set of tests I have I am B12 deficient and vit D deficient, B12 I am on 3 monthly injections and take sublinguinal supplements as i was very low. Vit D my GP said they wouldnt treat so I also take sublinguinal supplements for that.

Thank you very much for your advice, I really do appreciate it.

Gail

[Heloise in reply to Princesspea]

Since you already have T4 in your system and you are adding 25 mcg's, it probably would not take all that time. But then there is a rate at which it turns into T3 (hopefully). I wouldn't be able to guess but I'd try for as close as possible....if possible.

[Princesspea in reply to Heloise]

Heloise

Many thanks

Gail xx