Endo agreed to let me try T3 but should I be on... - Thyroid UK

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Endo agreed to let me try T3 but should I be on T4 Levothyroxine with signs of adrenal fatigue?.

chapers profile image
14 Replies

A few months ago I got some amazing help from this site and as a result did lots of research so I went armed to my doctor and Endo.

I was originally diagnosed with severe Hypothyroidism and acute stress reaction. I already had coeliac disease and lichen planus, but lost all my hair in two months then developed vitaligo, lymphodemia in face after infections, and was told my auto immune system was "shot"

I wasn't getting anywhere on t4 levothyroxine ( been on it about 15 years) and I went from two very demanding jobs to unable to get out of bed etc every symptom of adrenal fatigue. My Gp and the Endo were so convinced I had Addisons they put me on steroids and I felt wonderful. However I had two tests done both came back normal so I was taken off steroids. The consultant I saw re Alopecia mentioned a defective gene link with coeliac so I did some research and had the DI02 test done at Regenrous Lab who were brill and it showed the defective gene which probably meant I was not converting the T4 to T3. My GP is fantastic and I showed her all this and she agreed to let me take started on T3 20 and T4 50 . I expected to feel a lot better but didn't then saw on your site that I was taking one of the "dodgy" batches, so I went to my equally wonderful pharmacist who found out the batch was produced unlicensed and probably not containing the strength of active hormone. I took a new batch increased to T3 30 and T4 20mcg and felt so much better. I have just had my appointment with the Endo who didn't like any of this and threatened to take me off the T3 until I argued my case. She has insisted I increase T4 to 50 and reduce T3 to 20.mcg.

I took the adrenal fatigue questionnaire and scored "severe " the other tests I had at Regenerous showed symptoms "consistent with severe adrenal fatigue," also "high levels of testosterone and estrogen dominance " but the Endo says there is nothing to be done ( NHS don't test Reverse T3 or FT3 /RT3 she doesn't accept the lab tests , but on the leaflet Levothyroxine says it shouldn't be taken if you have signs of adrenal fatigue, so I am concerned.

I know there are Natuaral thyroid replacements and T3 available over the internet but as I have been off sick for a year they are sacking me and I will only have an old age pension so can't afford to go down this root.

Endo says my blood test showed a partially suppressed TSH and very low T4 hence increasing it. Any ideas?

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shaws profile image
shawsAdministrator

Oh dear, I am sorry you are having such a terrible time. It's bad enough having hypo as well as all the other health complications. I am also sorry you are going to lose your job after working all these years.

The Endos are usually very nervous of prescribing T3 (following the BTA guidelines) and also the patient having a very low or suppressed TSH due to the taking T3 and a low T4 (also due to taking T3). I should imagine that's why she wants to adjust your medication as they believe we will get a heart attack. It's a shame if you were finally beginning to feel well too. She is probably nervous.

This is what Dr Lowe said and go to question dated July 15, 2006.

Because you are hypothyroid, you most likely won’t have to find a doctor who’ll treat you with T3 alone. Most of our patients who became hypothyroid after antithyroid therapy don't use T3 alone; the majority fully recover their health using T4/T3 products. The particular product doesn’t matter; it may be Armour, Nature-Throid, Thyrolar, Westhroid, or over-the-counter desiccated thyroid. In our experience, all of these products are generally more effective than T4 alone.

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

Another excerpt

What does matter is that your doctor not use the "replacement" practice of adjusting your dosage by your TSH, T4, and T3 levels. If he does, you’re not likely to fully recover your health. In contrast, if he adjusts your dosage by your symptoms and especially your resting metabolic rate, you stand the best possible chance of fully recovering.

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

The fact that your Endo hasn't stopped the T3 altogether is a good thing. Maybe her suggestion will work for you so I would give it a chance. Also you know the T4 to get from the pharmacist and make sure he keeps a stock in for you.

Dr Skinner said that if you get to an optimum dose of meds your adrenals should recover themselves. As you know, some other believe differently.

Excerpt:

For someone taking 100 mcg of T3, we expect your pattern of lab results—a low TSH and high T3. However, your TSH and T3 levels are irrelevant to whether you're overstimulated or not. Two studies we just completed confirm other researchers findings: these tests are not reliable gauges of a patient's metabolic status. Many patients taking T3 have TSH and T3 levels like yours but still have severely low metabolic rates. Their metabolic rates become normal only when they increase their dosages further. Their metabolic rates become normal and they have no detectable overstimulation.

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

These excerpts are for your information as your Endo wouldn't like it if we tried to tell them how to treat their patients.

You can ask your Endo if a patient has had thyroid cancer, do they believe by suppressing the TSH that harm will be done as you felt so much better with a (low/suppressed) TSH.

chapers profile image
chapers in reply to shaws

Thank you so much for this.. Do you know how other than how you feel how do you know your metabolic rate is okay?

shaws profile image
shawsAdministrator in reply to chapers

With hypo everything slows including our metabolism and once on optimum meds which should get you back normal health including metabolism.You should feel good with no pains/aches. It is a process which cannot be rushed, it is gradual.

Clutter profile image
Clutter

I'm sorry you're losing your job because of your poor health. I buy T3 online at £13.95 for 100 x 25mcg inclusive of p&p. If you need details PM me.

gingo profile image
gingo in reply to Clutter

I too would like this info PLEASE but don't know how to PM!

rossilin600 profile image
rossilin600 in reply to Clutter

I would also appreciate this info but do not know how to pm?.

Everdean profile image
Everdean in reply to Clutter

Please would you also let me know where you get these T3 from. Thank you

lucylocks profile image
lucylocks in reply to Clutter

Hi Clutter would you mind pm me details also.

Many thanks browny

chelle43 profile image
chelle43 in reply to Clutter

Don't know how to pm! Please help me clutter I'm loosing the will to live!! I'm constantly seeking advice from doctors unwilling to help!

chapers profile image
chapers in reply to Clutter

Thanks for this. yes school became an Academy didn't want experienced staff, everyone life was made a misery, and left I stuck it out but was doing 7 -7 and had my dad in hospital so there every night got tripped up by student smashed face in etc had hypothyrodism and then it turned into acute stress reaction the rest is history. But been off a year so they say incapable of work. Sadly cashed pension when I got divorced but luckily can claim oap at 63 xx

Clutter profile image
Clutter in reply to chapers

Private Message. Click on your username and click on the white envelope in messages.

chapers profile image
chapers in reply to Clutter

sorry dont know what PM is

Giagal profile image
Giagal in reply to Clutter

Hi Clutter, Could you PM me with this advice as well please. Thanks!

chapers profile image
chapers

Hello me again . I have been unwell and my skin has broken out all over in lichen planus (legs) and arms and body not sure very itchy cant sleep. I saw consultant he says its the scratching that's made it worst don't scratch! Easier said than done. Had another blood test as although I have felt better taking T3 (20) with T4 (50) still not great.

Is it possible for someone to comment on them doctor said fine. Also when I had a private test done at Regenerus Labs, it showed" Established (Phase three) Adrenal gland failure (hypoadrenia)and "estrogen dominance "it says the "EQ is optimal and Estriol is less potent than other estrogens and when present in sufficient quantities plays an antagonistic role" It goes on" the upper testosterone level and reported symptoms are suggestive of metabolic syndrome (insulin resistance) The Endo refused to look at the papers she said that she couldn't do anything about them. Any comments please.

Bloods

TSH 0.07 mu/L range 0.35 - 4.94

FreeT4 5.9 pmolL 9.0 - 19.0 * (I thought this was low)

Free T3 4.0 2.6 - 6.1

sodium 138 mmol/L 133.0- 146.0

Potassium 4.4 3.5 - 5.3

Chloride 104 95.0 - 108.0

Creatinine 52 60.0 - 120.0 *?(low)

Est GFR 109 mL/min Normal GFR 90mL/min

Urea 4.6 2.5 - 7.8

Liver F T

Albumin Serum 38 g/L 35.0.- 50.0

Total Bilirubin 20 0.0 - 21.0

Alkaline Phos Serum 56 u/L 20.0- 130.00

AST 20 5.0 - 40.0

ALT 16 5.0 - 40.0

CRP 2 mg/L 0.0 - 10.0

CBC Hgb 137 g/L 120.0 -.160.0

WBC 7.0 4.0 0- 11.0

plats 308 150.0 - 4.00.0

RBC 4.2 4.0-5.8

Hct 41.0 35.0 -48.0

MCV 96 80.0 -99.0

MCH 32.3 27.0 - 32.0 *High and what is it?

MCHC 338 300.0- 340.0

RDW 13 12.0 - 16.0

Neut 5.3 2.0 - 7.0

Lymph 0.9 1.0 - 4.00 * low

Mono 0.6 0.2 - 1.0

Eos 0.2 0.1 - 0.6

Baso 0.1 0.0- 0.1 *

ESR whole blood 11 1.0 - 14.0

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