Rather confused about where I'm going?

[Baobabs]

Almost 3 months ago I began taking 25 mgs of T3 as Levothyroxine was having no effect on my Hashi symptoms and reduced my 75 mgs of Levothyroxine to 25 mgs on the advice of my Endo. The blood results 6 wks later were as follows:

TSH - 1.450 - range 0.270 - 4.200

uIU/mL

FT3 - 2.29 - range 2.000 - 4.400

pg/ml

FT4 - 0.54 - range 0.930 - 1.700

ng/dl

Following the above results she increased my Levo, T4 by 12.5mgs. Although I do have more energy since adding T3 to the mix I am still symptomatic with stiffness' aches, pains and a little weakness in upper body, constipation, dry skin and flaking, weak, disintegrating nails. Am I expecting too much or even too much too soon? I have another 2 weeks to wait before I return for blood draw on current given meds. What am I looking for regarding levels because when diagnosed my FT4 was 16.4 (range 3.1 - 6.8), FT3 4.9 (range 12-22) and prior to beginning T3 treatment but with increased levels of vit/minerals building blocks, my FT3 had risen to 5.9.

Although the new range is different as I attend another hospital now, surely my FT3 and 4 were better when diagnosed than they are by most recent results on meds? I would be grateful if anyone could help me understand.

[SeasideSusie Remembering]

Baobabs

Your FT3 is nowhere near high enough for someone on T3. You'd expect to see that nearer the upper end of the range. When taking a combination of Levo and T3, some of us need a higher FT4 than others so that's rather individual. One would also expect to see your TSH low or suppressed when taking T3.

Increasing your Levo by 12.5mcg may not even bring your FT4 into range, I'm wondering if your Levo needed to be lowered in the first place when adding the T3.

I think you need more T3.

Are your nutrient levels optimal

Vit D - 100-150nmol or 40-60ng/ml

B12 - top of range

Folate - at least half way through range

Ferritin - at least 70, preferably half way through range

[Baobabs in reply to SeasideSusie]

SS, thank you for your swift reply. All my vits and minerals are now at three quarters to upper level of ranges apart from my D3 that seems to swing from slightly less than half way up the range to three quarters up range. I cannot seem to sort out a maintenance dose. Although I think my Endo is good she seems to think because I feel 'better' I am fine. Well I still don't feel 'good' and I continue to think there could be a possibility I may have rhumatoid arthritis. All the marker tests are within range but I do believe they are not definitive. Puffiness and thumb joint swelling has largely subsided since the intro of T3. My concentration and ability to focus has also improved. When I wake in the morning I still feel like a bus has run over me. Not sure if it is muscle or bone? So hard to tell.

[SeasideSusie Remembering in reply to Baobabs]

Are you taking an oral spray for D3, and magnesium (magnesium helps the body use D3).

[Baobabs in reply to SeasideSusie]

No. Can I get this mail order as I live and work abroad. I take a high dose from my hospital pharmacy but it has no vit k in it and I know you recommend this combination.

[SeasideSusie Remembering in reply to Baobabs]

BetterYou themselves deliver outside of the UK, scroll down to check their "Delivery and Returns" information"

betteryou.com/vitamin-d-k2

AmazonUK sell it so check the Amazon website for the country you are in, they may do it at a better price.

As you have Hashi's then an oral spray will be better absorbed than tablets/capsules/softgels.

[Baobabs in reply to SeasideSusie]

Very much appreciated. Do you think I should push for an increase in T3 meds on my next appointment? As I do not take meds on the morning of drawn bloods until afterwards, could this be the reason for low levels of blood T3? I know it has a much shorter life than T4 meds.

[SeasideSusie Remembering in reply to Baobabs]

How long after your dose of T3 was the blood drawn? It should be no more than 12 hours (I always split my dose the day before and take half in the morning and half about 8.30-9pm as I know I will do the test at 8.30 the next morning). If you took your last dose of T3 24 hours before the blood draw then your FT3 result will be a false low. In that case, I believe you add 20% onto the result to give somewhere near what would normally be circulating.

If I were you, as you are due blood tests in 2 weeks, stay on your current dose, on the day before your next test split your T3 dose and take half in the evening, then see what your new levels are like. Then make the decision as to how to tweak your doses.

[Baobabs in reply to SeasideSusie]

Thanks, sounds like a plan. I just overall feel like I need a bit more T3 and if I still have symptoms then I will pursue other reasons.

[shaws in reply to Baobabs]

T3 and T4 combinations suit many. I tried several variations and then went onto T3 only and I haven't looked back since and take it once daily which suits me.

I leave 24 hours between dose and blood test of whatever thyroid hormones I took and and my last results were satisfactory at 5.5 pmol/L (2.60-5.70pmol) on T3 alone. I also know of a doctor who took his 150mcg of T3 once daily as did his T3 patients. SeasideSusie

[Baobabs in reply to shaws]

I so appreciate this help. My Endo says I have to have T4, Levothyroxine but I really think it has never had any affect on my. I really don't understand her reasoning?

[shaws in reply to Baobabs]

If you are in the UK, they used to prescribe T3 usually added to T4 but because the cost is now so exorbitant and they are convinced T4 alone is just as good they wont prescribe.

Many members source their own T3 but no information is allowed on the open forum, only by private messages. If something improves our health I think it is disgraceful we're forbidden as it is the pharma companies who are at fault for the exorbitant price and trying to fleece the NHS. This link is by a doctor who was also an Adviser to Thyroiduk.org.uk before his untimely death.

web.archive.org/web/2010112...

[Baobabs in reply to shaws]

Shaws, I am not in the UK but live and work in Saudi Arabia. I have moved mountains to find an Endo who believes in the treatment of T3 and have trawled the globe to find and secure sources of T3. The NHS fortunately has no control over prescribing meds for me. I am still not home and dry with recommended treatment as you can see. My private med company is currently funding 80% of my T3. I really feel for those who are struggling to be prescribed T3 and source it economically. I suspect many more folk are benefiting and would benefit from T3 than the media would have us believe. The whole situation is shocking and if we were dropping dead/going into comas, some one somewhere would have to sit up and listen and exercise proactivity. What concerns me is how much damage is being done to bodies that are constantly and long term under or inappropriately medicated.

[shaws in reply to Baobabs]

They aren't educated so we have to deducate ourselves as much as possible.

web.archive.org/web/2010112...

[Baobabs in reply to shaws]

Just finished reading the whole of this article, thanks. It makes my blood boil. Heads should roll over the current T4 prescription only protocol. Why oh why are people in the field not reading and pioneering this type of research? This paper intimates what many of us already believe to be the state of play with regard to the poor success of T4 only treatment. It seems when something as important as the engine of the body goes wrong, because we suffer and remain vertical, one size must, will, has to fit all!

[Sv_cy in reply to Baobabs]

You have very low T4. It has to be in the middle range. You have to increase a little T4 (take 50mcg) and keep the same dose of T3. As T4 transforming in your body in T3 than if you take more T4 the level of T3 will also go up. T3 has to be in the upper level.

[Stourie in reply to shaws]

Hi Shaws, why is no-one picking you up on the fact that you are leaving 24 hours between your t3 intake and your blood test. I mentioned a couple of times that that was what I did and was told that it should only be 12 hours. I really didn't understand why as I take my t3 in one dose and still wanted to feel good 24 hours later. My results were at the top of the range. Jo xx

[shaws in reply to Stourie]

I am not medically qualified and when I first took T4, which didn't improve my health at all I was prescribed some T3 to a reduced T4 and took them together first thing just as I had T4. T3 had a magical effect.

After the first blood test on the combination I was phoned and told to stop T3 but I refused so I was told to reduce T4 instead. So I thought I cannot keep adjusting doses to keep doctors happy and myself unwell.

By this time I had joined Thyroiduk.org.uk and Dr John Lowe (scientist/researcher/doctor) was also an Adviser and I followed his recommendations which was one daily dose of NDT or T3 - he'd never prescribe levothyroxine.

He stated that T3 has to saturate all of T3 receptor cells and then the effect of that one dose lasts between one to three days which I have found to be true (of course everyone will be different). Also why not take one dose if it works for you. Dr L was also an expert on T3 as he himself took it for thyroid hormone resistant at 150mcg daily.

Unfortunately for many he died through an accident and his website was closed but some bits of it are archived. He also developed a non-prescriptive NDT which his wife now deals with.

Also if we take NDT which contains all of the hormones (and I tried that too - as we do if searching for something that removes clinical symptoms). I know many split NDT but Dr John Lowe didn't believe in splitting doses and I followed his method. So, when I added T3 I immediately felt so much better I just kept to the same regime. I don't know who made up the "12 hours gap" but it wasn't Dr L.

[Baobabs in reply to shaws]

Thank you Shaw’s for this extended explanation as it also helps me understand dosage.

[shaws in reply to Stourie]

Oh! I forgot. Dr Lowe only took an initial blood test for diagnosis and thereafter it was all about how the patient's symptoms were alleviated but also they had to eat well and vitamins/minerals optimum.

How much money have Big Pharma made with all of the blood tests taken to confirm or not if someone has hypo. Whereas it was all about clinical symptoms alone before blood tests and levo.

I also source my own T3 and doctor has no say-so but of course we have to be very sensible and be aware of how our body reacts to dose(s).

[Baobabs in reply to SeasideSusie]

Oh and I've never had a weight problem but starting to gain weight and have a brilliant healthy and clean diet.

[SlowDragon Administrator]

Are you on gluten free diet? Or considering trying it?

[Baobabs in reply to SlowDragon]

Gluten, lactose and soy free for 13 months, thanks.

[SlowDragon Administrator in reply to Baobabs]

Personally I found I need FT4 and TT4 in range, as well as good level FT3

I slowly increased Levo dose back up in 12.5mcg steps retesting at each increase

[Baobabs in reply to SlowDragon]

Thank you for this advice re levels. I am never surprised at how little medics seem to know about levels? Instead of mine agreeing to let me have a bit more of something she would rather send me for more tests to discover if I have another condition or autoimmune disease.

[Baobabs in reply to SlowDragon]

Oh I do remember her saying something about yes I feel better and levels are in range then I replied my FT3 and FT4 were in range when I was diagnosed.

[shaws]

I am not medically qualified and copy items of interest to me.

I do not think you can test 'waves' that occur in T3 but the fact that we improve is positive especially if we begin to be symptom-free when gradually raising dose. You cannot test the amount of T3 in the T3 receptor cells. I have read so often that T3 'is quick-acting and should split doses but people can do what they think is best for them. It is 'quick' when compared to levothyroxine but I think many believe that because T3 enters the cells quickly that it, in itself, is shortlived - but don't realise the effect once in the cells then it's work begins.

I shall have to look at my latest results to quote and shall add it onto this answer.

Bear in mind that there's no magic answer, just that some thyroid hormone replacements work better for some than others who remain symptomatic. It is trial and error and one size doesn't fit all. I really don't bother about testing as I am well and just get a yearly one to please GP.

As Dr Lowe states, he only took a blood test for the initial diagnosis and thereafter took none but concentrated on titrating doses until the patient was symptom-free. Before blood tests and levo were invented, we were diagnosed upon clinical symptoms alone and given NDT. If we improved we were hypo. Dr L also advised his patients that we should eat well and all vitamins/minerals have to be optimal.

[shaws]

What bothers me is that they will not even give thyroid hormones until the TSH is 10. There's been a recent post that the TSH was over 150. The figure 10 for TSH must be the highest in the world, whereas they've forgotten the skill/knowledge of titrating doses and they adjust doses up/down to try to 'fit' into a certain figure instead of concentrating on symptoms and not give us another prescipt for them and TSH not 1 or below.

[shaws]

It is of greatest importance to have a co-operative doctor who listens to the patient.

The explanation of FT4 and FT3 is in the following link:-

thyroiduk.org.uk/tuk/testin...

Dr Lowe would never prescribe slow-release hormones. Go to the date July 5, 2000 on the following link and you may find the question after that one also helpful.

web.archive.org/web/2010103...

Also read in the above link question/answer February 4, 2008

Dr Lowe was also a researcher/scientist and doctor.