High TSH/high FT4... How to medicate?

[StarFlower2]

My Tsh is 10.41 (0.30-4.20) FT4 17.3 (12.0-22.0). No FT3 or RT3 done with these tests. I have low antibodies so no Hashimoto's!

I have a history of high RT3 and high ferritin (both over range in the past) I believe the ferritin was high due to inflammation in my joints, it's now back in range.

I've been self medicating with T3 for 2 years (off meds for 8 weeks before lab tests at endos request). At the end of last year I had adrenal problems so decided to see an endo privately. Only morning cortisol was tested and was slightly over range... she said there was no adrenal insufficiency and no need for further tests. She prescribed Levo 25mcg daily for subclinical hypothyroidism. I've taken it for approximately three weeks with a slight improvement, less fatigue but dry hair and skin, low temperature and slow weight gain.. 7lbs in 3 weeks. In view of this I decided to add in 12.5 mcg T3 split into 2 doses.

I was advised by another help group not to take Levo with my history of high RT3. . I dropped the Levo 4 days ago and have declined into feeling very low with major fatigue.

Can someone advise me please? Should I take Levo with my FT4 this high? Should I combine Levo with T3?

Advice is so welcome.

[jimh111]

Just to confirm I understand you had Tsh 10.41 (0.30-4.20) FT4 17.3 (12.0-22.0) whilst on no thyroid medication for eight weeks. This is unlikely to be 'subclinical hypothyroidism', usually fT4 would be lower.

Previous results were:-

TSH - 1.93 (0.40-4.00 mlU/L

Free t4 - 14.7 (11.5-22.7 pmol/L

Free t3 - 10.0 (2.8-6.5 pmol/L

Were these taken when you were not on thyroid tablets? You also had low antibody levels which rules out autoimmune hypothyroidism (which can release spurts of hormone).

TSH is not suppressed or low when we might expect it to be. This raises the possiblity of 'resistance to thyroid hormone' (RTH) caused by a genetic mutation of the TRB1 receptors. This is only a possibility, it is a rather rare condition. This condition is only investigated at Addenbrooke's Hospital in Cambridge. Your endocrinologist should consider this possibility and either refer you to Addenbrooke's or at least ask their advice. If this isn't the case your endocrinologist should investigate why you are presenting with unusual blood test results.

It's also there is some thyroid pathology that is spontaenously releasing hormone, in which case I guess your symptoms would vary from day to day.

I'm sure you will do better on liothyronine but it is important to get to the bottom of what's going on. So, see your endocrinologist and insist on action. Maybe take someone along with you for support and to add extra weight.

[StarFlower2 in reply to jimh111]

Thank you jimh111

The blood tests you mention where done when I was taking T3 meds. I fasted 12 hours prior to the blood draw.

These latest tests were done after coming off meds for 8 weeks. The endo wanted me off T3 and get to baseline before tests were done.. Prior to this I was self medicating with 50mcg Liothyronine. I do believe with a TSH this high I’m fully hypothyroid not subclinical, the endo did not seem to think my labs were unusual and was really only interested in the TSH. I’m totally confused by them and in agreement with you I wonder if I do have a genetic mutation of TRB1 receptors! My private health plan won’t cover me further with this problem so I doubt I’ll see this endo again.

I wonder how I can get an appointment at Addenbrookes. Maybe my GP can arrange a visit for me.

[jimh111 in reply to StarFlower2]

OK, this means you probably don't have the genetic mutation, it presents with elevated fT3, fT4 and a normal or high TSH. In any event only a UK endocrinologist can refer to Addenbrooke's for genetic testing as it is a tertiary referral centre.

TSH 10.41, fT4 17.3 is a bit unusual. 17.3 is rather high for 'subclinical' (a nonsense term, you can only decide if it is clinical by doing a clinical examination, not with a blood test). It suggests you may not be converting T4 to T3 very well. This would explain why the TSH is still high. An fT3 result is needed.

TSH, fT3 and fT4 whilst on no hormone would be really useful. rT3 testing is a waste of money as nobody knows how to interpret the results. rT3 will be high if fT4 is high. Occasionally low selenium levels can account for blood tests and symptoms like yours. I'm not sure but I think selenium deficiency is rare in the UK. I haven't read all your posts, do you have a previous TSH, fT3, fT4 result from a time when you were not taking thyroid hormone?

[StarFlower2 in reply to jimh111]

See below

[StarFlower2]

My earliest thyroid blood tests were done in 2015. Never on any medication for thyroid issues At this time.! I had mega fatigue and was unable to work...hair loss..weight gain, fog brain, low temps! Seeing these results I thought maybe I was pooling T3. I also thought high RT3 was possibly the cause of my fatigue.

Total Thyroid 210 (58-161)nmol/L

TSH 1.93 (0.40-4.00)mIU/L

FT4 14.7 (11.5-22.7)pmol/L

FT3 10.0 (2.8-6.5)pmol/L

FT4 1.5 (2.0-4.5) ratio

RT3 0.72 (0.14-0.54)nmol/L

TG <20 (<40)IU/mL

TPO <10 (<35)IU/mL

It was at this time I decided to try and suppress the RT3 with a T3 only medication protocol (Dr Lowe). However, one daily dose did not suit me so I titerated up slowly whilst supporting my adrenals with adrenal cortex. I slowly increased T3 meds to 75mcg daily. It seemed to work and once feeling well I reduced down to 50mcg. (I think the sweet spot was 62.5mcg! I Slowly came off completely when I saw the endo at the endo of last year, it took just over 8 weeks. She was not prepared to discuss my previous blood tests and was not in favour of liothyronine.

I’ve not taken the prescribed levo for a week . Currently on 12.5mcg T3 daily. Not sure where to go from here. I’m worried my adrenals might struggle if I add more T3. My temps are low and a bit inconsistent. I’m really at a loss what to do next.

I had a dna test with 23&me last year so I’m currently sifting through their extensive report for a TRB mutation.

I really appreciate your help, thank you for your feedback.

[jimh111 in reply to StarFlower2]

I'm confused! Are these results TSH 1.93, fT4 14.7, fT3 10.0 from a time when you were not taking thyroid hormone? I got the impression results like this were from when you were taking L-T3.

I think most of the talk about adrenals is an irrelevance, hypo patients tend to have basal adrenal hormone levels that are a little too high due to reduced clearance. I'd completely ignore the adrenal concept as adrenal problems are rare. I don't think a private DNA test will cover thyroid hormone receptor mutations, it's a rare condition which needs specialist investigation.

[StarFlower2 in reply to jimh111]

Yes those thyroid results were my first tests for thyroid done by Genova and arranged by a nutritionist as no GP would do anything other that give me antidepressants for my chronic fatigue symptoms.

It’s all very confusing but I chose to suppress the RT3 with liothyronine as didn’t know what else to do. If my symptoms were hyper I would have understood it a bit better but symptoms were that of hypothyroidism and I assumed from research that I needed to suppress RT3. I did feel better on T3 it took about 3 plus months and I felt I’d go my life back. My FT3 bloods have always been top or over range.

I’m worried I’m doing the wrong thing by taking L-T3! That is one of the reasons I decided to pay to see an endo (she came highly recommended) I was somewhat disappointed she didn’t test FT3 and I’m confused she prescribed Levo but expect she had no other choice!

I did see Dr Peatfield in 2016, at that time I was taking 75mcg T3. He suggested I reduce the T3 dose and at in 1/2 grain of WP thyroid. I was advised by another group not to take anything with T4 in it as I might push up my RT3 again..... I’ve remained confused!!

I don’t know if I should take another blood test, take L-T3 or stay with Levo or follow Dr P’s advise and do a combination with NDT.

If there’s a Dr out there who wants a challenge I’d love to hear from you :))

Thank you jimh111

[jimh111 in reply to StarFlower2]

Lynn, Your case is very unusual! Usually an rT3 test is a waste of time and not much use. Your rT3 was elevated with a normal fT4 which is unusual, normally high fT4 drives 'type-1 deiodinase' which converts T4 to T3 and rT3. Elevated rT3 in these circumstances is rare and can be due to a complex thyroid disorder, interaction with medication or a non-thyroidal illness. Are you on any medication for other disorders? Investigating this would require a competent NHS endocrinologist.

I surprised your endo didn't run an fT3 assay. Even those who claim fT3 is of no use invariably do it for their private patients.

From a practical point of view you are unlikely to drive rT3 much higher with levothyroxine (or NDT) as long as your fT4 doesn't go high. I would be inclined to go with the minimum dose of L-T3 that resolves your symptoms without causing your pulse to go high. Once you are a bit better you will be in a stronger state to presssure your GP to give you a referral. If you GP is worried about your high fT3 they can prescribe a low dose beta blocker as a preventative (one that steadies the heart rate, not one that slows it). A TRB1 receptor mutation is a possibility but I think some other cause is much more likely.

[StarFlower2 in reply to jimh111]

I had no other illnesses before I started with chronic fatigue. I visited my gp as early as 2013/14 regarding this..he thought it was due to menapause and prescribed hrt. It made me feel worse so I came off it. I was then prescribed antidepressants, again just made me feel worse. In view of all of this I went to see a nutritionist who arranged for thyroid and adrenal tests with Genova diagnostics. My gp said the lab tests where wrong and was not interested in reading private labs. So I decided to self medicate with Levothyroxine, at this point I was desperate. I arranged to see an endo privately at the beginning of 2015. At this point I’d been taking 50mcg daily for 6weeks and needed some one to say I was or was not doing the right thing. He was not interested in reading the Genova tests but arranged for a panel to be done, results below.

labs done after 3 days off levo

March ‘15

TSH 1.23 (0.27-4.20) mII/L

FT3 20.7 (12.0-22.0) pmol/L

Total T3 3.7 (1.3-3.1) nmol/L

He said there was nothing wrong with my thyroid and if anything I should be feeling hyper and not to take the Levo. He sent me to a local hospital for sex hormone tests. I was low in estrogen but within the parameters of my age,...again prescribed hrt. I took it for 2 weeks...felt really ill with bad migraines and sickness....came off it.

I posted on here and had a few private messages which directed me to a report Dr Lowe had produced. It seemed very similar to my issues.

I joined another thyroid help group who guided me with self medicating T3, this was mostly to suppress RT3. I started to feel much better but couldn’t get the correct balance with the meds. One day I’d feel great the next I’d feel hyper, occasionally I’d feel hypo...but in general most day I felt ok. I stayed with T3 until I saw this different endo at the end of last year which brings me to the present day. Not knowing if I’m doing the right thing. If I will get worse by taking Levo. If I need more liothyronine or if I should take T3 & levo or NDT!

Thank you jimh111, I appreciate you advice. I’m currently taking 12.5mcg L-T3 and don’t feel great but I will stick with it. I’m experiencing some chest flutters over the past few days. My blood pressure is:

Sitting -sys 120 dis 89

I will go to my GP and see if she can do anything more for me. I doubt she will understand my lab results, they are somewhat unusually as you say.

[jimh111 in reply to StarFlower2]

Your GP can check for other conditions that may influence your thyroid hormones. One possibility I forgot was iodine deficiency, with low iodine proportionally more T3 is produced, but this doesn't really fit in with normal T4 levels. You should not excessively supplement with iodine as too much can make you hypo. By the way you've written T3 above results, it's obvious you mean T4. Good luck with your GP.

[StarFlower2 in reply to jimh111]

Thank you jimh111 much appreciated.

Yes, A typo... should have been ft4 not ft3 in above results

[eeng]

Have you ever felt well on Levothyroxine alone? I only say this because although many people on this forum need NDT or T3 to feel well there are many many people who feel good taking Levothyroxine alone. If you can feel well on Levothyroxine only it is much less hassle with doctors.

[StarFlower2 in reply to eeng]

I totally understand what you are saying eeng. It’s much easier to follow a doctors guidence.

About a year ago my GP was concerned my T4 levels were low. I tried to explain it was because I was taking L-T3 but she still wanted me to try levo which I did. I felt ok for a few months but ended up going back to T3 as my hair and skin became dry and itchy and I had weight gain. The endo I saw recently prescribed Teva liquid levothyroxine. Apparently it doesn’t have the fillers and it absorbed more quickly. After 10 days I felt 25mcg was not enough so I added in 12.5mcg of T3. I was told by another help group to stop levo because my FT4 is high and I might convert it to RT3 by adding more.

I stopped levo a week ago and do feel worse...and now very confused. My temps have dropped since then which makes me think the levo was doing some good.

At this point I’m not sure I should be worrying about RT3. All I know is that when it was high I felt awfully sick.