Just had dose increase to 75mg Levothyroxine and need some feed back

[Obvs]

Having had a blood test for GP last week, I also did my own test from home a couple of days later to check Vitamins etc. I also had an ultrasound of the thyroid as I seem to have had phlegm for at least 4-5 months, plus I wanted to check if it showed any particular signs. At the time of the tests I had been taking 50mg Levothyroxine for just over 6 weeks:

The 02/03/20 GP bloods (taken at 10 am as there was a queue this week) came back as:

TSH 0.2 (0.4 - 5.0 mIU/L)

FT4 14 (9 - 19 pmol/L)

My 04/03/20 bloods (taken at 7 am) were:

TSH 0.46 (0.27-4.2 mIU/L)

FT4 17.5 (12 - 22 pmol/L)

FT3 5.3 (3.1 - 6.8 pmol/L)

Thryroglobulin Antibodies 19.3 (0 - 115 kU/L)

Thyroid Peroxidase Antibodies 20.1 (0 - 34 kIU/L)

Vitamin D 92 (75 - 175 mol/L)

Ferritin 106 (13 - 150 ug/L)

Active B12 105 (37.5 - 188 pmol/L)

Folate 24.6 (8.83 - 60.8 nmol/L)

The Ultrasound report was discussed with the GP and came back with:

'a slightly heterogenous echotexture in keeping with chronic thyroiditis.......a small cyst at the isthmus of the gland 5mm, graded U2 and is benign.......in the right and left neck a few lymph nodes were seen sized within normal limits.....'

The GP consultation was awkward as I had come to get an increase in Levothyroxine and the GP didn't think I needed it as my results were good and they weren't comfortable in my TSH going any lower. I insisted that my symptoms were still persisting: headaches, feeling super tired, feeling cold (can't warm up my fingertips), slow thinking, slugish etc though I generally have a better mood than before taking Levo. The GP could see that I wasn't happy to stay on 50mg, and said 'where is this going?' and would I perhaps take it 50/75 on alternate days?

After advice given my first post, I take the Levo early in the morning with water and delay eating anything or tea/coffee for 3 or 4 hours. I am dairy and gluten free now, have very little sugar/alcohol, do exercise a bit more gently etc.

Was I right to insist on an increase and what do I say at the next consultation?

Thank you in advance

[Ruby1]

I think you must have been amazingly persuasive if you’ve convinced him you need an increase. 50micrograms is a small dose, but to me your results look fine.... but there are plenty of people on here more knowledgeable than me, especially where vitamins are concerned.

I think he should be applauded for offering you the option. As to what you say at the next appointment, surely that depends on how you’re feeling?

P.S. you’ve got the same date on both tests, but you said a couple of days later

[Obvs in reply to Ruby1]

Thank you for your reply, Ive adjusted the date, up too late last night but wanted to get the post written up.

Possibly because I was started on 25mg and Ive gone gluten free at the same time as starting the Levo my TSH has gone down more dramatically (?)

But it makes going to the GP more stressful if you think you are going to have to debate what level of replacement hormone you need to feel half way normal. Perhaps I need to research what a low TSH level does when you are taking Levothyroxine?

[Ruby1 in reply to Obvs]

I think the implications are poor bone density and heart problems if you are over medicated, but others on here know more. My TSH is nearly always below range, but I feel well so they never decrease my medication. Perhaps I am at risk?

In fact because I feel well, I probably can’t help. I have not yet bothered with going gluten free nor fasting around the time of taking thyroxine. Perhaps one day I may need to.

I understand now why you’re worried, but give it time. Perhaps you will feel better?

I think it’s always best to be honest with your doctor because there’s always the possibility that your symptoms are caused by something else.

[Obvs in reply to Ruby1]

Yes indeed, I don’t feel by any means that I know it all. Hopefully there aren’t to many things going on at once!

[vocalEK in reply to Ruby1]

This handy calculator shows that although a doctor might say her results "look fine", they are not optimal. Her FT4 is only 55% through range, and FT3 is 59.46% through range. Most people need both to be in at least the upper third of the range, and some need them to be in the upper quadrant in order to alleviate hypo symptoms. chorobytarczycy.eu/kalkulator

[Ruby1 in reply to vocalEK]

You're one of the people more knowledgeable than me No-one had replied within 9 hours, so I thought I'd share what I thought. At least it sounds like the doctor is open to discussion.

That calculator looks handy. Is there an English version?

[vocalEK in reply to Ruby1]

No there isn't, but you can just plug in your numbers, ignoring the words. The units of measure don't matter either.

[Ruby1 in reply to vocalEK]

ah - the 1st is for the result and the next two for the range then? I was being a bit slow

[vocalEK in reply to Ruby1]

Yes, that's right. The first blank is the result and the next two are the bottom and top of the range.

[Wetsuiter in reply to Ruby1]

google (or something) gives me the option for English

[Obvs in reply to vocalEK]

Thank you for that, it’s a useful tool to keep track of how T4 and T3 are progressing as all these different units can be difficult to interpret.

[Hidden]

Hi

Just because your results are "In range" doesn't mean they are right for you! Which is what most doctors don't seem to realise. And if your T3 and T4 are in range it doesn't matter much if the TSH is low. Some of us seem to need low TSH. Also, the very fact of taking thyroid hormone replacement often causes a disconnect between TSH and thyroid levels. My TSH has been as low as 0.005 but I still have what seem to be hypo symptoms, with no sign of being over medicated.

TSH isn't a thyroid hormone. It's produced by the pituitary and is supposed to stimulate the thyroid to up its production.

Your T3 and T4 levels show plenty of room for improvement, so continue to push for increases if you seem to need them (you have to wait 6-8 weeks between tests and any increases - nothing happens fast with thyroid treatment). It's usually best not to go much over range, especially with T3, but you will probably know if you are over medicated (I'm told the symptoms are not nice!)

[Obvs in reply to Hidden]

Thank you for your reply. It’s only through educating myself particularly through this forum and various other sites that I have grasped an understanding of some of this condition. It has been an amazing eye opener, and I feel a little sad for lost time where I didn’t realise I was ill and was trying to prop myself up with B vitamins, exercise etc until the crunch of more remarkable physical symptoms (all the while looking like I was ok).

The GP was ready to send me away with a blood test scheduled in 3 months, so I knew I had to pipe up. GPs need a quick online reference, they can’t be experts in all fields.

[Hidden in reply to Obvs]

I was blessed to come across this forum soon after being diagnosed (though. looking back, symptoms were present for several years before). Information can be a powerful weapon in fighting to get the treatment we need.

[Hidden]

Yes,you were definitely right in asking for an increase and it is good to see that things are going right for you.I was left on 50mcgs for 10 years and at that time did not have the knowledge that I have now as a member of Thyroid UK.It was only when I asked to see an endocrinologist that things began to change and I started to make some progress.

It really upsets me that so many GPs are not properly trained in hypothyroidism,when it is our health and well being that they are supposed to be looking after.

Long may your improvement continue.😊

[Obvs in reply to Hidden]

Thank you🙂 Yes I will go back to that GP and thank them for listening, and perhaps they will need to listen a little more.

Sorry it took so long for you to get listened to, hope it continues to be the case.

GPs have a big task of being adaptable and individualising care when they have 2000 patients each; some of their patients are becoming more educated whilst others perhaps aren’t able to assess their own situation.

[JOLLYDOLLY]

I am not medically trained, but I would say, you might just need a further increase to 75mcg daily instead of alternative days, seems to suit most people who develop a thyroid condition. I would also say, that you might need help with B12, vitamin D and possibly iron. All walk hand in hand unfortunately not for all, but a good majority of us.

The trouble with Dr's is that they do not have all the medical training they need and at the end of the day, it is maintaining good results. Your second lot of T4 results are indication that you are nearly on the right dose for you.

I was born with a non function partial gland, so am completely dependent on medication - current dose, which I call my natural dose, is 200 mcg of T4 and 20 mcg of T3. My TSH can flucuate between 0.09-4.57 and slightly above. I also recently started a gluten free regime and I do believe it is helping.

[Obvs]

Thank you for your advice and I’m just reading a post about B12 and I’m going to add that on. I used to take Spatone daily, so I might go back to that too.

I hope the gluten free works for you. It immediately stopped me getting bloated. I’m also careful with gluten free oats as they seem to do something too unfortunately

[Longinthetooth]

I'm not an expert & can only say from personal experience with Levo. I was started on Wochardt which kicked in almost immediately & I felt elated. Unfortunately, it started to disagree with me & so I was put onto Eltroxin which works fine for me but I have had to ask for increases myself. I now feel balanced on 112.5. Funny amount, but I take 125 one day then 100 every other. It's whatever works for each individual. I don't take any vitamins any more but I am gluten free. Only use arrow-root flour, lots of eggs, whole milk, all veg, fruit, fish, meat. Very rarely eat man made products. You have to plan ahead as you can't grab a sandwich for lunch. I do drink lager, I'm not a saint.

I tried Thyroid S but it didn't agree with me. The trouble is when you are unwell you will try anything when you have to wait & beg with your GP.

Bear with it & keep going back to your GP or try another one in your practice.

All the best.

[Obvs]

Thank you for the reply. Good to hear you’ve managed to reach a good balance. Did the doctor you go to look at your serum TSH and or T4 whilst you were increasing your dose of Levothyroxine? Did it get talked about?

I had an undiagnosed allergy to dairy before I became ‘subclinically’ hypothyroid, (although I now think I was tipping over into hypothyroid), which meant I mostly steered clear of it for some time. It doesn’t hurt to eat freshly made food, but the world is all about fast food, and so it’s just another area where we are swimming against the tide.

Hope you continue to feel well.

[Wetsuiter]

you should have another blood test in a couple of months, so giving you more info

[Obvs in reply to Wetsuiter]

Thank you. Yes I’ll get another test done at home in 6 or so weeks and see how everything is doing. I’ve woken up today and my wrists and thumbs aren’t sore, so I’m happy about that.