Should I expect improvement of symptoms after one month thyroxine if dose is correct?

[Xenelk]

Biggest problems are dizziness, cold, low body temp, pins and needles, tight chest, insomnia, exhaustion. TSH was 2.1 just two weeks after starting current dose.

[Jackie]

Hi Sorry emphatically no. Sometimes even worse when start treatment. Initially you need lots of test repeated, TSH, T4 and Free T3 for the right dose. They are both T4 and the T3 , if FT3 lowish too, re evalued at each test and doses altered accordingly until feel better and all 3 bloods are right.You also need the other thyroid relevant tests, autoimmune and hormonal, B12 + foliates ( B12 should be well up in range), Diabetes, iron/ferritin and vit D, if D low then a corrected calcium before D treatment. Corrected calcium must above all things always be in range, D makes it go up a little.Expect it to take about a year, depending.

Best wishes,

Jackie

Not sure if you know, to reply to a specific post click on, "Reply to this" under that post.

[Xenelk in reply to Jackie]

Thanks Jackie. This is such a long horrible road! Have had all other tests you suggested and they are ok so that's a good thing!

[Jackie in reply to Xenelk]

Hi That is good but makes sure you have a pint out with ranges, sometimes GP`s OK is not ours!Especially FT3.

you will improve, just takes time and a rocky road.

Jackie

[waveylines in reply to Jackie]

Hi Jackie,

Can I ask you about a corrected level of calcium before taking vit D3 treatment? I only ask because it would not have worked in my case -my vit D was so low that I could not absorb any calcium - in fact I was leaching it out of my bones which is why i ended up with a fracture. My NHS bone specialist had to raise my vit D level first then supplement with calcium. Of course we are all different.....

[Jackie in reply to waveylines]

Hi, Of course you can if calcium low, you are quite right. It is high, over range, corrected calcium that is dangerous as an electrolyte. Low calcium is dangerous in a different way ,as you say bones need it, essential too. I hope that you had a follow up DEXA scan? I have severe osteoporosis and calcium ( corrected above range, so although my D on the floor, osteomalacia with that, I cannot any longer take the vit D as it would make my corrected calcium even higher, it is above range anyway. Now, for the reason of bones NICE recommend taking calcium with D on a script , but only if calcium is low in range. They do need each other but not as simple as that. All my relevant consultants say that they were and are always told that they are not allowed to do anything except test vit D levels as so specialised ,it must only be done by an Endo, we both know that it is not always possible. It is only if calcium near the top of the range that one has to be great care that it does not go over. I was on a huge dose of D ( script) which did not even put my D normal. I had to first lower it and then more and eventually stop when my calcium went over range. Kidneys , heart, stones lots of places etc.

I hope you are happy with that explanation.

Best wishes,

Jackie

[waveylines in reply to Jackie]

Thanks Jackie. Poor you- you have had a really tough time. I hope you are feeling a bit better now?

I was on my way to Osteomalacia but thanks to my bone specialist this has been prevented.

Yes I did have two follow up scans -i have stabilised above mid range for my bone density -which was more than I could have hoped for.

NHS Bone specialist can and do indeed not only test for for Vit D levels but also treat -at least in my area -I suspect there are wide variations in approaches to treatment of vit D according to where you live.

And of course I hear what you are saying: if your calcium levels are already at the very top of the range and then you add vit D it can cause serious problems.

This is why this site is so great -so many people on here have top info on areas that they have had experience in which leads to a fantastic source for everyone. xx

[Jackie in reply to waveylines]

Hi Glad you are sorted out. I hope it all continues to help you. Good that you have someone reliable to take care of you.

Best wishes,

Jackie

[helvella Administrator Thyroid UK]

I have been known to suggest that it might take as long to recover as it took to get as ill as you became. All too many people have had a period of months to years during which they felt not right. Recovered thyroid hormone levels are only one part of the equation. The fullest recovery possible will really take much longer.

I have said this many times and it is not meant to put a damper on how people feel. But to emphasise that even after many months or years of treatment, recovery can continue.

Your chances of going straight onto the optimum long-term dose of levothyroxine are fairly low - but it is not impossible. Things like TSH only stabilise after several weeks so it is a surprise to see you with a result after two weeks. (I think it reasonable to check things are going in the right direction but repeating tests costs money and that seems to drive the decisions.)

And do not accept terms like "OK" or "normal" for blood test results. It sometimes appears universal that simply being numerically in range counts as ok or normal. For example, a B12 range of 181 to 800 - with a result of 182 being called "normal". It is anything but normal. Please get all your blood test results printed out - with reference ranges.

Rod

[Xenelk in reply to helvella]

Thanks so much Rod. Getting great advice after only one day here which is so refreshing! I always get copies of labs to do my own checking and have picked up a few things that way already. Will keep on fighting xxx

[waveylines]

Welcome Xenelk! it is great site -as you are already discovering there are people on here with much experience and knowledge who will definitely help you.

Over the years i have to admit i have found it necessary to read up and become knowledgeable over Hypothyroidism -this is because doctors training in this area is very basic - if I remember right they cover the whole area of thyroid problems in matter of a few hours of training.....

Knowledge is power and it really helps when you are with the GP if you know what to ask and have enough understanding to evaluate what they are telling you and politely counter argue if necessary. Finding a sympathetic GP helps but in the main I have found it has been up to me to get myself well. Without reading up I doubt this would have occurred...... If you look on Thyroid uk's main website they have an excellent reading list and I believe they also have loan system for books.

Rodd is right -be prepared for treatment to take time before you start to improve. xx

[Xenelk in reply to waveylines]

Thanks for the lovely welcome.have learnt so much in the last few months and will continue to do so as I continue on this journey. Loving all the people here xxx

Lynda from Oz xxx