New Blood test results please help!

[sulamaye]

Hi, got the latest results from the surgery for help and advice from all you smart people, but first The Story So Far....

Diagnosed hypo in 1994 age 27, by approximately 2001 was on t4 combo with 20mcgs t3. Never tested for Hashimoto's. In 2011 hit M.E/cfs wall on 175mcg T4 and 20mcgs T3. In 2012 Endocrinologist in England reduced T4 to 150mcgs as TSH only 0.01.

In June 2014 Welsh GP took away all T3 and cut my T4 to 100mcgs overnight because my last bloods in November 2013 had been : -

Free t3 5.2 pmol/L range 3.1 - 6.8

Serum tsh levels 0.01 mU/L range 0.27-4.2

Serum free t4 16.4 pmol/L range 11-25.

Having already worked hard to reduce and lose many many M.E symptoms by about two weeks into slashed medication I had the least M.E symptoms since first being ill for about 1-2 weeks, it felt like i could glimpse recovery, but then started significant crash. Increase and return of many many symptoms I thought I'd seen the back of a year or so earlier.

Sat out 8 weeks on the 100mcgs of T4 only, then got new bloods done, plus suggestions from here (although don't know what happened to the vitamin D one) and these are the results from the 11th August 2014:

Free T4 = 17.4pmol/L - *

TSH = 4.64 mU/L range given 0.27 - 4.20 Notes say: High, if no change in levothyroxine in last 8 weeks, elevated TSH suggestive of poor compliance/ inadequate dose.

Free T3 = 3.4 pmol/L - *

Ferritin = 75 ug/L

Folate = 6.8 ug/L

B12 = 373 ng/L notes say: B12 deficiency unlikely, seek further advice if suggestive feature present eg neuropathy **

Thyroid perioxidase antibody level = 39 U/mL High Original Result 39.0 U/ml (<34.0)

* No range given but last results did give range, could assume same lab?

** When first ill with M.E self injected B12 and in January 2012 my levels were 1451 pg/mL - since GP cut my meds in June a huge explosion of neuropathy symptoms, thrumming and tingling that I though I'd more or less seen the back of re-emerged big time .

I have written and asked to be referred to Cardiff Endocrinologist and not the cretin who GP phoned (because she was proposing cut to 50mcgs!!!!! alone) and sanctioned cutting my medication overnight with no titration, and have an appointment with a different GP in practice to discuss whether they will refer me. Since having my bloods done last week I have been taking an additional 25mcgs T4 and using Blanchards ratio of 98.5 to 1.5 been taking as small a bit of a 20mcg T3 tab as I can get, 2.5-5mcgs (obviously realise this completely variable quantity wise.)

The questions I have are:

1.How do my recent bloods seem, anything anyone thinks relevant that GP should address? I'm pretty sure that when I do see her she will ramp up my T4 by 25mcgs in response to that TSH, anything else I should be urgently getting her to address or just wait until I'm talking to a human being in Cardiff (I hope)? Am I Hashimoto?

2. Does anyone have a chemical/medical explanation as to why initially when my dose was slashed in June I had such a positive response and health significantly improved for short but sweet time? Is that anything to do with RT3 levels changing in reaction to dropped T4?? Or anything else anyone else understands?

3. On my new regime of 125mcgs T4 plus tiny bit of T3, I felt improvement for first 6 days and then have had bit of a dip, increase in various symptoms etc. What should I do now? Is the dip because too much T4 and not enough T3 or need for just T4 increase? Or Both need increasing? I have a stash of unused meds that I am using to supplement, so what would you do bearing in mind last weeks bloods? What needs most attention?

My aim is to attempt to get optimum T4 T3 balance (I'm not going down the NDT route) then present to GP as what's best for me and hopefully not have such a supressed TSH, perhaps 0.1 as English Endo had suggested.

Sorry this is so lengthy, but all your help and advice and information really very much appreciated. Thank you!

[shaws Administrator]

I think for someone on levothyroxine your blood results are appalling. Reducing your dose according only to your TSH is the result of upsetting your metabolism altogether, instead of improving it. I often had a TSH of 0.01 and Endo didn't blink and eye at it. That didn't mean that I was free of symptoms - not at all. They actually do NOT know how best to treat patients with the thyroid gland. It is a mystery to them, in the meantime the patient suffers. As it is, doctor's before the blood tests were introduced, medicated patients with natural dessicated thyroid hormones which were adjusted due to symptoms alone.

Change your GP, not that another may just be as awful. Some links and the topics at the top of the page contain lots of useful information. We have to read and learn for ourselves in order to recover some semblance of good health. Excerpt:

1. Dr. Lowe: First I suggest that you ask your doctor to question the scientific basis of the endocrinologists’ notion of "fine tuning" by TSH and thyroid hormone levels. If he does, he’ll learn that the changes he sees in your TSH and thyroid hormone levels are probably nothing more than natural variations in the levels. He would probably see the same variations if he always kept your thyroid hormone dose the same. I’ll briefly review some of the evidence that your doctor should read.

2.TSH levels don’t significantly correlate day-to-day[1] or week-to-week.[2] One research group measured the TSH and free T3 and free T4 levels of ten normal young men.[3] When they measured the levels every 30 minutes for 24 hours, they found that the hormone levels were lower during the day and higher at night. During the day, the free T3 was 15% lower, the free T4 was 7% lower, and the TSH was 140% lower. When the researchers measured the hormone levels every five minutes for six to seven hours (7 PM-to-11 PM), the levels varied every thirty minutes. The TSH level varied 13%, the free T3 15%, and the free T4 11%.

3.Many endocrinologists talk of using the TSH and thyroid hormone levels to "fine tune" hypothyroid patients’ thyroid hormone dosages. Considering how much the hormone levels vary, however, it’s obvious that the concept of fine tuning is mistaken. For the sake of their patients’ health, endocrinologists should promptly abandon the notion. This is unlikely, though, due to financial inducements the endocrinology specialty receives from corporations that profit from doctors endlessly ordering the hormone levels to "fine tune" their patients dosages. Hopefully, though, you can use the scientific evidence to persuade your doctor to use a safer and more effective approach with you.

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

re this phrase "This is unlikely, though, due to financial inducements the endocrinology specialty receives from corporations that profit from doctors endlessly ordering the hormone levels to "fine tune" their patients dosages. " In the USA doctors/endocrinogists (so I have been told) get financial inducements from Big Pharma to use their products which I personally think is wrong. That prevents us getting the best medication we need on a personal level.

[sulamaye in reply to shaws]

Thanks, yes I'm planning to change my GP once I've battled for a referral to a better endocrinologist, just know all GP's are useless here so might as well finish the fight they started and move when referral made so I am at least starting with a new GP with a tiny bit of trust, after having my trust wrecked.

[Clutter]

Sulamaye, I expect your GP will increase your meds to 125mcg and retest in 8 weeks. FT4 isn't bad and should improve on 125mcg. FT3 is almost at the bottom of the range. If you convert well FT3 should also improve on the increased dose. You have autoimmune antibodies (Hashimoto's) but very low. They may have increased due to the meds cuts and increased meds may make them dormant again.

When I first added T3 I had initial improvement for 3/4 weeks then slumped off. It improved when I increased T3. I didn't follow T4/T3 ratios. Just knew I felt better with increased T3, but I did increase slowly and not more frequently than 6/8 weeks.

As you have had neuropathy ask for MMA and intrinsic factor to be tested to check for pernicious anaemia. If they're OK and PA is ruled out supplement methylcobalamin sublingual lozenges, spray or patches to improve B12. Folate looks a little low too, so supplement folic acid or methylfolate and a B complex to keep everything balanced.

[sulamaye in reply to Clutter]

Thanks Clutter How would I know if I covert T4 to T3 well? Would that show on the next bloods, ie mt T3 would have come up? What is MMA?

[helvella Administrator Thyroid UK in reply to sulamaye]

MMA = Methylmalonic acid

Lots of the abbreviations and acronyms you might see here are in my list available here:

dl.dropboxusercontent.com/u...

A brief description of its importance in regard B12 here:

en.wikipedia.org/wiki/Methy...

Rod

[sulamaye in reply to helvella]

Thanks Krebs cycle again, all part of the mitochondria malfunction picture.

[Clutter in reply to sulamaye]

Sulamaye, When FT4 is good but FT3 remains low it is often a conversion issue. MMA can detect early B12 deficiency when B12 is low in range.

labtestsonline.org.uk/under...

[sulamaye]

Putting aside the various conflicting points of view about blood tests, what is an optimum t 4 level and t3 level?

[Clutter in reply to sulamaye]

Sulamaye, FT4 and FT3 are considered 'ideal' when they're in the top 75% of range but some think FT4 in the top 50% is fine. Taking oral T3 often means FT4 will drop slightly as there is less need to store so much T4 for conversion.

[sulamaye in reply to Clutter]

So at the moment neither my t4 or t3 are in the top 75% interesting. Thank you

[Clutter in reply to sulamaye]

Sulamaye, You were obviously undermedicated at the time of your recent test. What were your FT4 and FT3 prior to that? Bear in mind that illness increases rT3 and decreases FT3 too.

[sulamaye in reply to Clutter]

T3 5.2. T4 16.4 tsh 0.01 on 150mcg t4 and 20mcg t3

[Clutter in reply to sulamaye]

Sulamaye, FT3 5.87 and FT4 21.5 would be in the 'ideal' 75% range. Oral T3 probably lowered FT4 as mentioned.

I'm not sure many people actually have 'ideal' bloods or even if they should be a target. My last bloods were good but not in the top 75% and meant I was confident that increasing T3 was unlikely to shoot me over range as I felt very unwell when I was over range last year.