I have had a thought!

[Jefner]

Still searching for answers as to why for 10yrs on 150mcg I had no obvious fluctuations or dose alterations, then everything went down hill last autumn when I found this group and started to learn about the disease I have and discovered I had been doing things wrong as regards taking my Levo.

Well for pretty much the last 10yrs I had been taking my 150mcg Levo every morning with water along with my antidepressant. On many occasions over those 10yrs I had also taken my Levo in the mornings with milk!! Obviously since coming here I learned that the above was wrong because both milk and antidepressants can affect the absorption of Levo, so maybe for the last 10yrs I wasn't actually getting the full 150mcg into my system. My annual bloods also came out within range.

Since doing things the correct way (morning with water and take my antidepressant about 2hrs later), my last 3 readings since October have come out over range in T4 when I lowered my Levo by 25mcg each time and I still feed overmedicated on 100mcg which I reduced to about 2wks ago.

It makes me think that my suited dose (doing it the correct way) is lower because I wasn't absorbing the full 150mcg for the last 10yrs, hence it seemingly being OK for me until last autumn when things changed (maybe menopause related).

Just a thought!

[shaws]

It seems very plausible and I think you are right.

I hope you feel much better now with your lowered dose too.

[Jefner in reply to shaws]

I am glad you were able to understand what I was trying to say cus it took me ages as my brain isn't working today. I now often wonder how much of my 150 I managed to absorb.

Still suffering very badly with the anxiety, although I missed taking a tablet this morning, felt rubbish for most of the day but the anxiety has subsided a little tonight.

Reduced my dose again down to 100mcg 2 weeks ago and a couple of days later I felt fine again, all the anxiety/palps/panic just disappeared overnight, like I had never had them!!!! BUT then a week later I started to go downhill again, all the symptoms back and that's how it has been going now since October. There seems to be a pattern in that when I reduce my dose I feel better for a few days and then I start to feel like I am overmedicating again. Wondering whether to reduce down again to 75mcg. But having Hashi's this is the first experience for me in going hyper. My T4 results two weeks ago were 28.20 (12-22). My antibodies also came down especially my thyroglobulin from 4000 to 275.3!

[shaws in reply to Jefner]

Did you leave 24 hours approx between your last dose of levo and the blood test? Did you fast also and have the earliest possible blood test?

[Jefner in reply to shaws]

yes hon, I most definitely do that right now lol which I never did before, I always used to go for my tests around lunchtime after I had had my Levo and eaten

[Clutter]

Jefner, I think taking 150mcg with ADs and milk will have substantially reduced the amount absorbed. There has been research demonstrating that taking Levothyroxine with coffee reduces absorption by up to 40%.

[Jefner in reply to Clutter]

so it sounds like that even though I was taking 150mcg, I wasn't absorbing it properly and if I had been doing things properly all those years ago I might have been on a lower dose anyway? Now I am doing things correctly (including bloods) maybe even the 100mcg I am on now is still to high for me

[shaws in reply to Jefner]

Normal doses nowadays are between 100 and 200mcg. Before that normal doses were 200 to 400mcg so don't be in too much of a hurry to drop at present. You have to allow a reasonable time for any change in dose to take effect, i.e. I think a couple of months at least.

[Jefner in reply to shaws]

But my body is telling me that either levo no longer suits me or i am still overmedicating as the anxiety disappeared last night cus i missed my dose yesterday morning. Reading my body, each time i have dropped i have felt better and severe anxiety just completely disappears for about a week and the bang, out of the blue comes back again with a vengeance. I feel i am still overmedicating

[shaws in reply to Jefner]

It helped a lot when I added some T3 to T4.

I then tried Natural Dessicated Thyroid Hormones and was fine on it too. GP wasn't too keen (UK) so he prescribed T3 only and I also feel good thankfully.

[Jefner in reply to shaws]

What dose and how long were u on t4 b4 u tried t3? Do very low t3 readings prove u need t3 or can it b added anyway?

[shaws in reply to Jefner]

Over a year but I was always complaining of not being much better, in fact I felt worse and my TSH was 100 when diagnosed. I was taking 75mcg of levo.

They dropped 50mcg T4 and added 10mcg of T3 but I think it should really have been 20mcg of T3. (i.e. 20mcg T3 is around 60mcg of T4).

[Jefner in reply to shaws]

Was it your GP who put you on T3 off his own back or did you prompt him about trying it? Was your T3 low before you tried it?

[shaws in reply to Jefner]

I think it was because I was buying my own,.

[Jefner in reply to shaws]

Was your T3 low before you tried it?

[shaws in reply to Jefner]

Not that I know of. I think the Endo just tried a small dose and even that made a huge difference to how I felt.

[Jefner in reply to shaws]

sorry for all the questions. I have my first Endo appointment on Saturday and just trying to gather lots of info of anything that might help me. Not holding my breath cus it will be NHS but I have been ill for so long now I am desperate and I will fall to the floor of his office in tears and beg if I have to. The anxiety has been that severe and beyond anything I have ever felt in all my 53yrs on this planet and I have had a lot of anxiety in my life.

I am wondering whether the menopause has also changed things for me (post meno now). I am buying tests galore to try and pinpoint why things have changed for me. I am even going to purchase a mercury test as when I was growing up I had a crappy dentist who, every time I went according to mum, he did a filling. And also growing up I remember having anxiety and panic attacks as young as 10 and have had problems on and off ever since. From what I have been reading about mercury in amalgam fillings (and I still have many that are over 30yrs old) it could be related so for peace of mind I think it's a test worth doing. It was one of Dr David Clark's videos in the States that I picked up on it

[shaws in reply to Jefner]

I still have some mercury fillings but we will do/try anything in order to get well. We exclude this/that but nothing will work unless we have a thyroid hormone which works for us. The new Endo might be o.k. in Prescribing some T3 for you, I hope so.

I remember how unwell I felt and thought 'this isn't possible when you're taking medication' and it isn't when you get the right one for you. They should at least try something different.

[Jefner in reply to shaws]

Yes i know i am getting paranoid but with so many things linked to thyroid i am just trying to cross a few things off the list like tests for adrenals and leaky gut. Amalgam fillings are to look at later

[shaws in reply to Jefner]

Quite a few members have had their amalgam removed. You have to find an 'expert' dentist to do this.

[Jefner in reply to shaws]

Can u remember what symptoms they had and did they improve when done?

[shaws in reply to Jefner]

I don't think they had symptoms just thought it best to have it removed. You need a specialist dentist - not all might be efficient. I do have fillings but thought it best not to bother that's because I'm well now on my thyroid hormones (makes a big difference).

[Jefner in reply to shaws]

yeah, Blue Horizon have a test which I will do in the future but in the short term I have other stuff to work on with myself

[shaws in reply to Jefner]

[Jefner in reply to shaws]

have a read of my latest post hon after my first Endo appointment this morning

[shaws]

This is from research done by the American Thyroid Association - re NDT or Levothyroxine:-

SUMMARY OF THE STUDY

This was a study of 70 patients with hypothyroidism who were treated with either desiccated thyroid extract or levothyroxine for 12 weeks followed by a switch to orgthe other option for another 16 weeks. The participants were "blinded" during both phases – they did not know the type of pill they received. After each treatment period patients were weighed, had blood tests, underwent psychometric testing and were asked which therapy they preferred. The researchers report that 49% of the patients preferred desiccated thyroid extract, 19% preferred levothyroxine and 23% had no preference. Desiccated thyroid extract use was also associated with more weight loss. There was no difference in the psychometric testing or in any symptoms. Both types of thyroid hormone were able to normalize the abnormal thyroid blood tests.

WHAT ARE THE IMPLICATIONS OF THIS STUDY?

Although desiccated thyroid extract is not widely used, this study showed that many patients preferred this option as compared with levothyroxine. This result was observed despite there being no differences in thyroid function blood test and psychometric test results, although use of desiccated thyroid extract was associated with some weight loss. These results suggest that there may be a certain number of patients in who desiccated thyroid extract might be a reasonable treatment option. Further research is needed on this topic to confirm which patients this might benefit the most form desiccated thyroid extract therapy.

thyroid.org/patient-thyroid...

[Jefner]

Took 75mcg Levo this morning after having a two day break and so far so good so I think I am going to read my body and see how it goes

[shaws in reply to Jefner]

It's how we feel which is the best judge of our hormone levels.