How do people stop themselves from increasing t... - Thyroid UK

Thyroid UK
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How do people stop themselves from increasing their dose in desperation?

rosserk
rosserk

I am so desperate to feel better I’m struggling not to increase my medication before my 6 week blood test. I was started on 25mg of Levo 12 weeks ago and my doctor agreed to increase my dose 6 weeks ago even though I was in range TSH 3.7. For the first couple of weeks I felt fine on 25mg and the same on 50 mg but it doesn’t last long before I start feeling really poorly again. I’m really struggling not to increase my dose without medical guidance just to get some respite!

48 Replies
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rosserk
rosserk in reply to Hidden

Thanks I have another two weeks to go before my next blood test although my doctor thought I was fine on 25 mg after my results came back last time. She’s never going to test my ferritin, folate, b12, and Vitd But I’m going to get the test done privately 😜

HiddenThis reply has been deleted
rosserk
rosserk in reply to Hidden

Thanks that’s very interesting I will definitely discuss that argument at my next appointment.

Don't be tempted to increase your dose before the blood test. You may indead raise your levels so the doctor won't increase your dose and you run out of pills.

Unfortunately it is fairly normal to feel like you do. When we first start on levo our bodies sense the increase in the hormone and reacts by tell our thyroids to produce less. It can take what seems like a long time to get our levels where we need them to be and I am sorry to say there are no short cuts. Try to look after yourself in the mean time don't over exert your self and rest when you need to.

rosserk
rosserk in reply to Greybeard

Thank you, it’s really hard not to reach for another tablet and get that initial high but I understand why it’s important not to. 😜

Perhaps this link will help thyrophoenix.com/adjusting_...

Supplementing with Selenium helps with the conversion of T4 to T3.

rosserk
rosserk in reply to researcherUK

Thank you what a clever analogy. How much selenium should I be taking ?

researcherUK
researcherUK in reply to rosserk

You are welcome!

Start with 100 mcg/day of Selenomethionine which is an amino acid that contains selenium.

Do you have any results of blood tests, for example, for thyroid antibodies, ferritin, Vit D and Vit B12?

In the presence of antibodies, 200 mcg/day of Selenium is what's usually recommended; so, to help reduce antibodies, plus a gluten-free diet.

rosserk
rosserk in reply to researcherUK

Nope the only mention of any vitamins was about 18 months ago when my rheumatologist asked my doctor to consider prescribing ferritin because my level was slightly low. I only know about it because I got a copy of the letter. I didn't pursue it because it didn’t seem that important at the time and I didn’t think it could be responsible for how ill I was. The only tests I’ve had since diagnosis has been T4 & TSH I haven’t had my antibodies tested I asked and she said there was no benefit in testing them.

researcherUK
researcherUK in reply to rosserk

If they have prescribed you some iron, they ought to check your ferritin levels as well as well as a full iron profile test so to decide the next course of action.

I have to disagree with the doctor, Antibodies are important markers that can indicate whether you have Hashimoto's which is an autoimmune condition that is a common cause of hypothyroidism. In Hashimoto's thyroiditis, the body mounts an immune reaction against its own thyroid gland tissue, leading to inflammation of the gland (thyroiditis).

In addition to low ferritin, there are several common deficiencies that are present in Hashimoto's thyroidpharmacist.com/artic...

Ask for the following tests:

1/ a full thyroid function tests which include TSH, T4, T3 and the 2 thyroid antibodies (thyroidpharmacist.com/artic...)

2/ Iron panel test

3/ B12, Vitamin D

rosserk
rosserk in reply to researcherUK

Thank you but I have next to no chance getting my doctor to agree to those tests. I am having the tests done with medicheck. My surgery will only agree to test TSH and I will be lucky if they test T4 but I will ask at my next appointment.

researcherUK
researcherUK in reply to rosserk

At the very least, they owe you a full iron panel noting that your ferritin was previously very low.

Mike77
Mike77 in reply to researcherUK

Thanks for the link, it was really helpful, I just had to drop back from 125mg levo to 100mg after horrible hyper symptoms.... Your link really helped me appreciate the need for patience

researcherUK
researcherUK in reply to Mike77

You're welcome!

Apologies for jumping in researcherUK I just want to say thank you for posting this, after a few bad days it has gone a long way to help me "sit out" the titration period. The advice I've found here has been superb, I've followed it all as carefully as possible (with a few blips of impatience and sheer frustration!) With another blood test due next week I now anticipate improved results....but more importantly I'm beginning, very slowly, to see/feel odd signs of improvement.

My GP seemed to have run out of options and I suspect she felt that at 72 my age had a lot to do with my ill health. Despite feeling a wreck I had other ideas, I found TUK, sourced T3, started to self medicate..and onwards, hopefully to some new adventures.

As ever, huge thanks to everyone here...

DD

I hope you'll continue to feel better and better!

In all honesty I haven’t always resisted! But I don’t recommend. The problem is that if you increase before the test and still feel bad, or worse, you’re then 6 weeks away from the next test, instead of 2. It is possible to completely lose your way when adjusting according to how you feel, and then you need a test to give you some insight what to do next.

However, that said, returning of symptoms after two weeks, is exactly what happened to me, and I had used to increase Levo when symptoms returned - with some success. I think few people experience this pattern of symptoms, most are not that sensitive to levels and so have to rely on tests to adjust. I mainly have tests to keep GP happy, or rather so GP can record I’ve been monitored, as GP never happy with my test results ... such is life!

I suppose the disadvantage of having the test first is that it encourages the GP into a ‘let’s adjust according to the test’ mindset. My usual strategy was to have test then immediately increase dose before results came back. If you’re sensitive and if you follow your instinct your body tells you what to do. Just as you know when you’re hungry, it is possible to know when to increase levothyroxine

It’s your call. Be careful, good luck!

rosserk
rosserk in reply to Aurealis

I did take 25mg extra yesterday but I literally couldn’t take it anymore. It’s extremely hard and it’s like the doctors want you to be sick 🤒

Aurealis
Aurealis in reply to rosserk

I think I’d give the GP a ring and explain that you’ve had to increase it. I found GPs mainly supportive of me (though I chose GPs with care). They have to cover themselves. But if you’ve already increased the dose and it’s helped, GP will probably be supportive. If not ... maybe you could see a different one. One advantage of confessing is that at least the need for more tablets is known!

I think GPs hate and fear thyroid patients. We have to try to meet them half way. GP may have had reasons for ‘playing safe’ with low starting dose, but that doesn’t mean you should take it for long.

rosserk
rosserk in reply to Aurealis

I have only taken one 25mg tablet making my dose yesterday 75mg. I felt awful all morning and by late afternoon couldn’t stand it any longer. I’m not sure if it was the placebo effect or what but I felt better last night. I won’t continue and will stick with the 50 mg for the next two weeks. I would have more luck getting the Pope to speak with me than I would getting a phone conversation with my doctor. It’s a two week waiting list for a call back at my surgery unless you are dying and even then they’d tell you to ring 111!

Aurealis
Aurealis in reply to rosserk

I suppose you could book your telephone conversation and in the meantime be taking your increased dose. Not your fault they’re not available. Our GP service is like yours is, now. Used to be better.

rosserk
rosserk in reply to Aurealis

I’m booking my blood test Monday thought I had to wait 6 weeks not 4 for increase. If they don’t increase dose I will do as you suggest because that is an excellent point you make.

HiddenThis reply has been deleted
rosserk
rosserk in reply to Hidden

No I’m on 50 mg but Dr made me wait 10 weeks for the increase I’ve been on 50 mg just over two weeks. The first two weeks of 25 mg and I thought I was cured then I felt worse than ever. Tried talking to my GP then but she insisted I wait until I was tested at 8 weeks when that test came back my level was 2.9 and I was refused an increase without seeing the Doctor, I was told by the receptionist. I made an appointment and got an increase two weeks later. My last test four weeks ago was TSH 3.7 and T4 was 13.1. I thought I had to wait six weeks my increase to 50 mg was in the 14 of March are you saying I can be retested now after 4 weeks?

Your doctor doesn't know very much about thyroid, does she. Which means that you have got to learn as much as you can in order to survive.

There are many reasons why you shouldn't increase by yourself at this point. Firstly, you need to wait out the six weeks to the test, because it takes that low to synthesis the levo in your body. If you increase before the six weeks, you will need to wait another six weeks before you can test, or the tests will be skewed. Secondly, you will run out of pills! And, most people aren't tempted to take an extra pill because most people don't get an 'initial high'! If you do, you're rather exceptional! lol

Your doctor is very wrong about testing for antibodies. She may not know anything about them, but we, the patients, do. We know that if you have Hashi's, we need to try a gluten-free diet, because it often helps. And, we know that we are going to get swings from hypo to hyper and back again. We can be prepared for them, and learn to ride them out. We also know that selenium helps, and that we need to keep our TSH suppressed. Doctors rarely know any of that.

We also know about the importance of nutrients. Low B12, iron, vit d, zinc, magnesium etc. can make you incredibly ill, can even kill you. Add that to the miseries of hypo, and see what you get! Plus, hypos are usually low in nutrients, because they have low stomach acid. And, without optimal nutrients, our bodies can't use thyroid hormone. So, we need to test them, and supplement any deficiencies. It's all part and parcel of treating this disease. And, if your doctor doesn't know all that, she shouldn't be treating thyroid patients. You need a new doctor. :)

rosserk
rosserk in reply to greygoose

Thank you. I’m going to have the thyroid ultra test with medicheck so will no my antibodies result then.

greygoose
greygoose in reply to rosserk

That's good. :)

I'd also like to say that it's perfectly normal to feel fine on a dose for a while, and then the symptoms start to return. That's the way it works, and it just means that you need another increase in dose. Unfortunately, doctors don't understand this, they don't understand symptoms, so we have to be firm and insist that we need an increase, no matter what the TSH says. :)

I would chase up your doctor and ask to raise your levothyroxine more quickly. The recommended approach nowadays is to start patients off on 100 mcg levothyroxine unless they are elderly or have a heart condition. Titrating up from 25 mcg just delays recovery.

rosserk
rosserk in reply to jimh111

That’s my whole point because my doctor will only increase 25 mg at a time I’m looking at 24 weeks before I reach the same dose most people start on and then I’m still unlikely to be at an optimum dose. It’s torture having to wait so long. I have no chance of getting my doctor to increase my dose early.

HiddenThis reply has been deleted
rosserk
rosserk in reply to Hidden

Thank you. I’ve been going back and forth to my doctors once a month for three years begging them to help me crying in her office like a baby. I feel I have alienated every doctor in the practice and warning bells go off when I’m in the building. I am 100% confident they think I’m a basket case! It was only by chance the thyroid issue was found even though I had almost every symptom on the list. If she’d ever asked me to stick out my tongue she would have seen an excellent example of someone suffering a thyroid disorder. Strange something so simple would have sent them in the right direction!

But yes you’re right I need to assert myself, it’s just hard. 😜

jimh111
jimh111 in reply to jimh111

You do need to be assertive as reallyfedup123 noted. It's a good idea to take someone along with you for support as it's difficult to be strong when hypo.

This NHS document beta.nhs.uk/medicines/levot... states : -

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

The NICE guidelines bnf.nice.org.uk/drug/levoth... also give similar advice : -

For Adult 18–49 years

Initially 50–100 micrograms once daily; adjusted in steps of 25–50 micrograms every 3–4 weeks, adjusted according to response; maintenance 100–200 micrograms once daily,

I would print these off, highlight in bright yellow these paragraphs and dump them on your doctor's desk.

rosserk
rosserk in reply to jimh111

I think they started me on a low dose because I was bradycardic and had been suffering from unexplained angina.

I thought I needed to wait six weeks for next dose increase but after reading the reply’s here it seems I’ve got it wrong. I’m going to book appointment Monday for blood test and order a test from medicheck to test everything else. I will also need to book an appointment to argue my case because if the results come back in range they won’t increase the dose. I will need to battle the doctor and that’s where the problem lies, it will be impossible to get appointment for two weeks. I think what I will do regardless though is increase the dose according to the results and then have the battle later! Thank you for your help 😜

jimh111
jimh111 in reply to rosserk

Don't increase your dose before a blood test, but you can do so straight after and tell the doctor you have. Patients with heart conditions such as angina should be STARTED on low doses of thyroid hormone but after that they can be treated like other patients but obviously closely monitored. The six week wait is to allow the levothyroxine to build up in the blood, it has a seven day half life, so after six weeks the blood levels are within 98% of the final level. This is only needed for fine titration, during the early stages they can run the blood tests every four weeks as this will give results that are close enough for the early days. Bear in mind that many endocrinologists start patients on 100 mcg and then adjust as necessary. If your doctor is still concerned ask them to consult an endocrinologist.

I’m in a similar predicament to you. I’ve been on 25mcg Levo for 3 months, after the first month I started to feel very fatigued. I added 6.25mcg T3 to the mix, this helped a lot although not perfect, I’m sure I need an increase.

If you increase your levo and use your GP for blood tests I’d advise you to tell them what you are taking.

My latest bloods were don’t whilst I was taking the levo/T3 combo (my GP does not know about the T3)! My TSH has dropped from 10.4 to 3. Unfortunately, my doctor would not test FT3 and 4 so I’ve no idea where I’m at...I’ve skewed the results of my TSH by taking T3 and no way will I get an increase in levo now!

I’ve decided to stop T3 until I have another blood test in 6 weeks time. I’ll use my doctor and I’ll also do a full thyroid panel privately. Depending on the results I’ll decide what to do regarding my meds.

It’s all very confusing and I hope you sort it out and make the right decision. Good luck.

rosserk
rosserk in reply to StarFlower2

It’s a desperate situation and should be illegal! It’s literally hopeless trying to regain your health. It’s really no wonder people give up. I literally feel like I’m dying, it doesn’t seem possible someone can feel so ill and not be dying. I managed to persuade my doctor to up my Levo after 8 weeks. At six weeks she said my results were in range and I didn’t need an increase. I had to wait two weeks for an appointment and beg her to increase to 50 mg. if I’d had to wait 3 months like you I would have topped myself ‘literally’! Hope you get some help soon 😀

StarFlower2
StarFlower2 in reply to rosserk

I’m in total agreement with you rosserk. Do you get a full thyroid panel done at your doctors? I only get TSH which is a waste of time if I’m taking some T3. However, I’ll be interested to see where my TSH goes on only 25mcg of levo.

If you are prepared to continue along the road of private blood tests and self medication I would advise you to go it alone but the fact you are on Levo only makes me think you should be banging on your doctors door for more.

I’ve decided to do the next 6 weeks on this baby dose of Levo...if my gp says everything is normal after tests I’ll opt to self medicate and go back to the levo/T3 combo or NDT along with private testing.

Dragging ourselves around half dead for the sake of a Doctor is never right!

I hope you get better soon.

rosserk
rosserk in reply to StarFlower2

No my doctors only do T4 and TSH. Last test was just TSH which had increased from previous test 2.9 - 3.7

StarFlower2
StarFlower2 in reply to rosserk

You might want to think about testing FT3 with FT4 next time to see if your conversion is ok.

rosserk
rosserk in reply to StarFlower2

I was going to have the thyroid ultra test. I think that covers everything?

StarFlower2
StarFlower2 in reply to rosserk

Yes it does.

I’m going to look at doing UltraVit from Medichecks I believe it’s on offer until end of the month. It has a long shelf life so I’ll keep it until my 6/8 weeks without T3 is up.

rosserk
rosserk in reply to StarFlower2

I’m going to order my test Monday. Do you know if they are a match for NHS tests by that I mean do they give similar results?

StarFlower2
StarFlower2 in reply to rosserk

Results vary from lab to lab. It looks like medichecks and Bluehorizon are popular. Maybe the right thing to do is use the same company each time.

Unfortunately, I’ve never managed to get a prescription or diagnosis on private tests with any doctor I’ve seen. However, your gp might have a different policy...worth asking him.

Ultimately we are all responsible for our own health and we seek support from where we see fit. The internet, family, GP, whatever, if one route isn’t helpful we’re forced to rely on other avenues. Good luck all x

What stops me from increasing my dose too early is that doing so would reduce my chance of getting better soon.

We often see people who have increased too fast, or tried out T3 and NDT quickly and with no focus.

Often they're just in a pickle - all they know is that they don't feel well at the moment, they haven't found out anything useful on the journey. Once you're in that position, all you can really do is go back to square one and start again.

That is very true! 😜

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