Permanently suppressed TSH? BEWARE!

Hi gill, I'm not medically qualified so can't answer for sure. However, still having hypothyroid symptoms with bloods in range is identical to me except my thyroid doesn't produce any thyroid hormones. TSH = 170 when I was diagnosed in May 1991. Net effect for both of us is the same: no thyroid hormones produced, however it doesn't automatically follow that this would mean you have problems converting. They key here is that you are still having symptoms despite being in range. This what I have done since January to get to where I am now:

1. Registered on tpauk . org website (no spaces)

2. Explored 'treasure chest'

3

3. Read dr kendrick article

4. Found list of private endocrinologists who would prescribe NDT

5. Paid to see one

6. Got prescribed Nature-Throid. But found I was allergic to it. (Likely candidate: maize starch aka corn)

7. Tried liquid thyroxine. Found I was allergic to it.

8. Didn't take thyroid hormone for 8 days

9. Had blood test. Got lucky. Result: T4 in range. T3 low. Concluded not converting T4 to T3.

10. Used tpauk to search for thyroid medication without fillers.

11. Spoke to private encrinologist who sent me prescription for WP-Throid. Whilst waiting to find out if she would..,

12. I found ThyroGold which is a 'nutritional supplement' (but really an NDT in disguise), ordered smallest bottle of smallest dose £35 to UK incl p&p.

13. Read about dosing info on Dr C Lowe's website. Read the rest of the site whilst I was sbout it.

14. Got WP-Throid prescription. Cost would be about £90 for 1 month's supply as needed it in half grain tablets to start on a low dose and increase it slowly.

15. Didn't get WP-Throid as already on ThyroGold and it was working.

16. Still trying to find correct dose of ThyroGold. 2x300mg a day was too much. Think 2x150mg is too little.

17. Had blood test today (24 Aug 2015). Will find out results on Wed. My GP requests T3 and T4 so I should be able to tell if too low (I hope). Feels too low.

Note: I have kept my GP in the loop throughout. I've been seeing him every 2-3 weeks to discuss my latest findings and get his input. He's been treating me since 1993 and he was the one that identified the endocrinologist that I now see privately when she was working in the NHS.

I realise that this is a roundabout way if answering your question but I thought it might help you to see what I'd done so you could work out what best to do for your situation. Good luck!

Thankyou so much, Barbara, for putting that all down for me. I assume then that you are in the UK, going on what you said about postage, and generally your wording? I only ask because often there's comments on here from USA, say, and the system doesn't work in the same way here in the UK.

Really appreciate this, thankyou. Gill

Sorry. Thought I was PM' ing you. I'll do so.

PMs aren't working on my phone. I'll try later. If you PM me I might be able to reply.

Big hint...look on tpauk and register and access their treasure chest.

By the way, have you got your patient forums settings set to receive PMs (aka private messages?)

Yes, I'm in UK. I gather you are too.

I think the main thing is to find an endo that will prescribe NDT if necessary. Hence my hint to you.

Hello Barbara:

Amen to all of the above!  I agree!  Each person is so different and many of us can't take Levo.  Finding a good doctor is so important and knowing what blood tests to order.  Let us know how your blood work comes out. XO Shelly

Hi shelley, nice to hear from you. I always appreciate your input. You have the medical training that validates what I've read /worked out over the years. So much of thyroid stuff has nuances, angles and exceptions that other viewpoints are essential. It's even better when you agree!

Sorry, phoned glitched/jumped causing me to hit 'reply' too early...

Update on my latest blood test results (these should only be used as one factor of many measures to assess whether I am on the right dose, as it also depends on the 'patient's metabolic rate' as well as other tests). On 24 Aug 2015: T3<1.5 (range 2.6-5.7); t4=7.2 (9-19); tsh=9.7 (0.4-4.9).

t3 result is unmeasureable, which is not surprising as i had the blood test in the morning and last took thyrogold at 15:30 the previous afternoon. they interesting thing is that even though these results and the other tests (see below) show that i am being undertreated with thyroid hormone, i feel way better than i did when i was on levothyroxine (due to my not converting t4 to t3).

if you want some really good additional measures on how to assess whether your thyroid horme levels are correct, have a look at thyroidsolutions . com in the questions and answers section. there is s 20 point checklist for grading one's symptoms and advice for 4 additional tests to be done daily by the patient (basal pulse rate, basal temperature, basal fasting body weight and the 'tammy finger tip test'. there is also a list of tests that can be run by a doctor - though i doubt many doctors would feel they have the justification to do so, even if they have the resources. (range="" 2.6-5.7);="" t4="7.2" (9-19);="" tsh="9.7" (0.4-4.9).="" t3="" result="" is="" unmeasureable,="" which="" is="" not="" surprising="" as="" i="" had="" the="" blood="" test="" in="" the="" morning="" and="" last="" took="" thyrogold="" at="" 15:30="" the="" previous="" afternoon.="" they="" interesting="" thing="" is="" that="" even="" though="" these="" results="" and="" the="" other="" tests="" (see="" below)="" show="" that="" i="" am="" being="" undertreated="" with="" thyroid="" hormone,="" i="" feel="" way="" better="" than="" i="" did="" when="" i="" was="" on="" levothyroxine="" (due="" to="" my="" not="" converting="" t4="" to="" t3).="" if="" you="" want="" some="" really="" good="" additional="" measures="" on="" how="" to="" assess="" whether="" your="" thyroid="" horme="" levels="" are="" correct,="" have="" a="" look="" at="" thyroidsolutions="" .="" com="" in="" the="" questions="" and="" answers="" section.="" there="" is="" s="" 20="" point="" checklist="" for="" grading="" one's="" symptoms="" and="" advice="" for="" 4="" additional="" tests="" to="" be="" done="" daily="" by="" the="" patient="" (basal="" pulse="" rate,="" basal="" temperature,="" basal="" fasting="" body="" weight="" and="" the="" 'tammy="" finger="" tip="" test'.="" there="" is="" also="" a="" list="" of="" tests="" that="" can="" be="" run="" by="" a="" doctor="" -="" though="" i="" doubt="" many="" doctors="" would="" feel="" they="" have="" the="" justification="" to="" do="" so,="" even="" if="" they="" have="" the="">

t3 result is unmeasureable, which is not surprising as i had the blood test in the morning and last took thyrogold at 15:30 the previous afternoon. they interesting thing is that even though these results and the other tests (see below) show that i am being undertreated with thyroid hormone, i feel way better than i did when i was on levothyroxine (due to my not converting t4 to t3).

if you want some really good additional measures on how to assess whether your thyroid horme levels are correct, have a look at thyroidsolutions . com in the questions and answers section. there is s 20 point checklist for grading one's symptoms and advice for 4 additional tests to be done daily by the patient (basal pulse rate, basal temperature, basal fasting body weight and the 'tammy finger tip test'. there is also a list of tests that can be run by a doctor - though i doubt many doctors would feel they have the justification to do so, even if they have the resources.>

Thanks LAHs. I wouldn't want to worry people who are in this situation as keeping TSH suppresed after sugery tor this long is necessary. I think the key thing here is the amount of time mine was suppressed for (i.e. much longer).

My initial thoughts are: the trend being followed by your T4 is upward. When one also takes account of the time lag before blood tests reflect your actual thyroid hormone levels, it's not surprising that you're feeling hot. How soon can you have another blood test to confirm the upward trend? I wouldn't personally want to leave it more than 4 weeks.

I wish the doctors would feel the urgency.I've contacted my Endo to ask if I should alter my dose,but of course as I haven't heard by now,I probably won't before the weekend!

Ok,thanks for that.It is an option.Hoping if Oxford continue to monitor my levels,they will do all that's needed.Unfortunately I've had to go out of my area to find another specialist,so when he asks for my GP to get some checks done,he's not able to get everything done.Early days with this new Endo,as only seen him once.I just wish they would look at results when they come in,and realise I'm in discomfort and pain.I know they must be busy,but when I've asked a specific question about my dose,you'd think they could respond.I've had so many years of struggling with endocrine problems,starting with taking 5 years to diagnose Cushings disease,which finally happened 18 years ago.All so frustrating.Gill

Hello Gill:

My name is Shelly and I am an RN and live in the USA.  Sorry to know you have  Cushing's syndrome.  I was tested for that years ago and luckily it was negative.  However, it complicates things as you know.

With your condition since removal of the pituitary gland, it is most important they always check your  Free T3 & T4 levels.  Which thyroid med are you on?  your previous Free T3 level is within normal limits.

Feeling HOT seems to go with Hyperthyroidism signs. I heard that BOTOX injections, have a side effect of helping to lower sweating from the body. I know it sounds awful as it is a toxin, but made in a lab for the purpose of reducing wrinkles.  However, it does have that side effect which could help you.  The good thing is it can last 6 months or longer.  There also is a medication made for womem who have overactive bladders, and it can decrease sweating.  I forgot the name of the drug and I will look it up and get back to you.

Is the sweating all day?  How about at night?  How long have you had it? I do not know if NHS would consider BOTOX as a treatment for this. I am an American and over here if the problem is documented by a GP, our insurance may cover it.

I hope this helps. XO Shelly

Hello again Gill:

the name of the pill is Ditropan XL and is for women who have an overactive bladder problem, however it can decrease sweating as a side effect. it has been around a long time.  Maybe NHS has it in their formulary.  Keep me posted. Shelly

Gill, have you tried taking your basal pulse, that is your pulse rate first thing in the morning before you move?Mine is 60 in the mornings and if it rises above 70 i know I need to reduce my thyroxine dose. Did you say what dose you're on? I can't find it anywhere. If it was me in your situation i.e. at the top of the T4 range and I had hyperactive thyroid symptoms, I would reduce the dose without waiting for an endo to say so (but as I'm not medically qualified and I don't know what other medical conditions you have I couldn't advise you to do so). Ideally your blood test result should be in the middle of the range.

Thankyou to you both Shelly and Barbara.I'm on 200mcg Levothyroxine. Earlier in the year, this was increased to 250mcg because I appeared to be still having hypothyroid symptoms.However that made me feel worse, and my level went over the range too.

I'm sweating and overheating like I was with the Cushing's, and night time is awful. It keeps being suggested to me that I'm going through menopause, but I've spoken to my GP about my recent blood tests, and asked him if from those he thought I was menopausal, and he said no. I thought not anyway. That was brought up as a query before Cushing's was diagnosed.I was 32 then. Now 50, of course they want to blame the overheating on that. I know I've been worse since on the levo, and my bleeding became unmanageable, so an ablation was done. I no longer bleed, but have a menstrual cycle still which I'm keeping note of.

Sorry for all this, but you're both being so helpful, I'll tell you the rest of the complications.

Right, I'm on replacement steroids (prednisolone), levothyroxine, desmopressin for DI, growth hormone injections, Escitalopram as antidepressant, Pantoprazole for acid reflux, Mebeverine for IBS, calcium, magnesium, Vitamin B complex. Added to this I'm positive for Factor V Leiden, and have had 3 DVTs. I'm therefore on lifelong Warfarin, so can't have hormone replacement. Well that's me, at the back of the queue when health was handed out! Gill

Just in reply to this last answer from you, Barbara, I should be above middle of normal range, apparently, according to the pituitary foundation,just because of having hypopituitarism,but I'm sure 'at the top' must be far too high. I would love to be in control of my medications,just checking things like pulse etc. I hate the feeling that I have a fight on my hands when going to the hospital, just because I'm in their hands.Gill

Hi Gill,

Don't feel bad about moving out of your area and trying to manage your hypothyroidism, many of us out here travel hundreds of miles to get to the doctor who will prescribe the meds that we want. I myself have a 400 mile round trip, it's easier than trying to find another doctor who will prescibe Armour and who will measure more than just TSH and T4.

I wish doctors and Endos would read these posts, then catch up on the literature - then tell two friends.

I have wondered so many times if there are any doctors reading these discussions.It makes you feel that they could be so much more knowledgeable about meds they give out,and how we all differ with illnesses,instead of taking what they've read or studied as gospel. If it was all that simple,we would all be on the same dose of the same drug for each illness.Sorry having a rant! Gill

Well I'm doing.my bit wrt educating the medical profession. So far the tally is: my GP, my private endo (though to be fair she already knew it all except about ThyroGold), and now the Rheumatologist - he is going to investigate the link between thyroid and heart disease, specifically NDT fixing heart disease symptoms - he was very impressed that I had cured myself. I know it's only the tip of the iceberg, but it's a start!

Hello Gill:

I am 54, and have been peri-menopausal since age 50.  You know most women start it around age 50 and it can cause nasty feelings by being HOT.  I do not think yours is from that.

200mcg of Levo is a high dose and in my humble opinion, I feel you need say a T3 dose (Cytomel/Liothyroinine)  and a lower dose of Levo.  You may find that to work much better on you and it does not seem like the 200mcgof Levo is working that well anyway.

With all of your health problems it seems like it is not converting in you as wel as it should.

Is it just at night the sweating?  See menopause symptoms don't just happen at night.  I have had it in the day as I was shopping, sitting down watching TV, and sometimes at night.

DVT's are very scary and yes stay on the warfarin for that.  Sometimes steriod use can make you hot, but if you have been on that a while I would rule that out.

I really feel your not getting good results with the Levo and adding more is not the answer.  Some doctor's are not that aware of how to handle it or are bound by stupid formulary rules. Some doc's can't think outside the box!

Have you tried NDT (natural thyroid)?   I feel for you, and you have a lot of conditions, so if you need to vent your feelings go ahead and do so.  it is healthy to complain!  LOL, No problems here as I hear you loud and clear.

Let's see if you can ask your Endo or GP to change your meds so you can try and see if the sweating calms down. 

XO, Shelly

Hello Gill:

That would be great if they would. LOL.  They call it practicing medicine and it is code for they "they really don't know."  What bugs me is these stupid formularies for meds that they approve only.  So if the health system does not allow it - GAME OVER!  That makes me mad.

I often joke, that when I die I want "Tier 2",  (Brand drugs not approvedmy my health plan in USA),  on my tombstone!

Hang in there and let's see what you can do with the doctor you have. It is okay to complain....it is healthy to do so!

XO,  Shelly