Central Hypo and Hashi's with multiplying nodules. Next dose to fight for, and why. Expert Help needed!

[Wua13262348]

Had my NHS thyroid ultrasound 16/11/22. Waited 14 months. Given 6 days notice, and stated must have 7 days notice if need to alter appointment, otherwise go back to the end of the waiting list!

2cm flare on thyroid on M.R.I brain scan August 2021, confirmed as U2 nodule by private thyroid ultrasound May 2022, when additional 1.2 cm nodule found- both on left lobe. N.H.S. scan shows these are still there and haven't shrunk- don't know if larger. Additional small nodule found on right lobe. These won't be monitored or biopsied from fine needle aspiration, as only U3 and above are the criteria now, I think because of cost-cutting in the N.H.S. U2 nodules are abnormal, with c. 20% chance of becoming cancerous.

Blood tests:

10/4/89, TSH was 0.8 (0.3-3.8)

6/12/04, TSH was 0.84 (0.3-4.2)

2014, Thyroid test done. Patient access for whole year removed. Result being withheld. Blood pressure at eye appointment 2014, for suspected pituitary tumour, was 211 at the top reading. Large xantholasmas (fatty lumps), above and below both eyes (low FT3??), high cholesterol (6.5). Blood pressure was monitored by yearly 24 hour monitor for c. 3 years as often at 200. No blood pressure medication given, as seems to be situational rather than functional.

17/2/20, TSH was 1.84 (0.27-4.2), FT4 was 10.6 (12-22)

13/3/20, TSH was 1.80 (0.27-4.2), FT4 was 10.0 (12-22)

22/6/20, TSH was 2.75 (0.27-4.2). Was lettered to get FT4 rechecked at this date. Lab didn't do FT4. Repeated test and lab refused to test. G.P. shouted at me, said nothing wrong with thyroid, and don't ask again for it to be checked. Desperately, desperately ill.

24/2/22, TSH was 4.02 (0.27-4.2), FT4 was 5.5 (12-22), FT3 6.5 (3.1-6.8). So ill, felt had one foot in the grave-didn't have the energy to hop in and not come back out. Zero energy. I asked for thyroid check as can cause periodontal problems, and dentist gobsmacked that a tooth root has exploded into small pieces. Crumbled during hour long operation, every time specialist oral surgeon touched it. Dentist awestruck, stood in and watched, and still couldn't believe what he was seeing. Desperately, desperately ill. Rather be dead. G.P. phoned and said had hypothyroidism, and started on 25mcg levothyroxine tablets, 8/3/22. Given Northstar tablets which have mannitol. I have a VUS for mannose, so a possible enzyme deficiency for mannose, and its derivative, mannitol. Unaware at this point the tablets have mannitol. I believe I had a Hashi attack June 2021, which caused the tooth root scenario, and was caused by applying mannose to my neck and face??!! Neck was covered for 6 weeks in large red lumps and intensely, intensely, continuously itchy . Lost outer third of left eyebrow.

11/4/22, TSH was 2.08 (0.27-4.2). Taking 25mcg Northstar teva, which doesn't agree with me.

12/5/22, TSH was 1.87 (0.27-4.2), FT4 was 8.4 (12-22). Taking 25mcg, Northstar levo tablets 8/3/22- 26/5/22. Desperately trying to get a mannitol, lactose and maltitol/maize starch free tablet as also have a definite enzyme deficiency for lactose, confirmed genetically. Maize exacerbates my IBS. Discover from forum that Glenmark Levo tablets would suit. Battle to get it named on prescription, after much hoop jumping.

Pointed out to different G.P. 24/5/22, that readings are for Central Hypo, and that can have Hashi's at same time, and that nodules may be secreting T3 to sustain life, as thyroid failing, and that have had an M.E./Chronic Fatigue Syndrome diagnosis since 1987! Pointed out that optician referred me in 2014 to have a suspected pituitary tumour checked out, but I was not seen by the specialist they wanted me seen by. Seen by a very dismissive glaucoma specialist, who said opticians far too careful. Pointed out that my blood results indicate a pituitary tumour, and hypothalamus and pituitary need checked out. She said Endo aware of all my previous thyroid results and medical history, and that I shouldn't be on thyroid medication. ( endo advised a previous G.P. to take me off it and see what happens, blah, blah, blah., so don't think Endo supports even levo!) I told her the Endo doesn't seem to be very competent then, and should she refuse the referral since they don't usually see hypos, it would likely be a blessing in disguise, as she doesn't seem to have the expertise that I require. My referral was accepted.

Informed that since referred to Endo, no more bloods would be done, nor thyroid medication prescribed.

Endo is likely a diabetes specialist, though I think she has previously done thyroid surgery. The E.N.T. surgeon I saw in June just said since my private scan says U2 nodules, I'm fine. I mentioned Central Hypo, and according to him your TSH cannot be in the normal range for this. According to him, TSH has to be below or above range. I just rolled my eyes and left. It was a perfect example of how incompetent specialists are, and what thyroid patients are being subjected to.

On 25mcg Glenmark levo, 27/5/22-21/7/22. Unavailable thereafter.

Given 1 bottle 50mcg liquid levo, 22/7/22, to dose at 25mcg. I lettered G.P. to say that I needed to increase dose to 50mcg daily, as had been on 25mcg dose since 8/3/22. Requested core vitamins be checked. Not forthcoming, and no blood testing offered. Think NHS cut backs must be in play.

Medichecks private blood test 12/9/22:

TSH was 1.16 (0.27-4.2), FT4 12.7 (12-22), FT3 5.87 (3.1-6.8). Taking 50 mcg, liquid levo from 22/7/22-19/9/22.

CRP HS: 1.91mg/L (0-5)

Ferritin : 148.0ug/L (13-150)

Folate: 18.52 ug/L (over 3.89)

Active B12: over 150pmol/L (37.5-150)

Vitamin D : 126 nmol/L (50-200)

Thyroglobulin Antibodies : Sample error

Thyroid Peroxidase Antibodies: Sample error

Medichecks finger prick test and told better luck next time, some people have a problem with finger prick test, and will send another kit. I didn't attempt it. A professional blood draw was done to fill the test tube. Informed them of this,and said that if the readings are weird, they are correct , and are as a result of Central Hypo. They then released the above results.

They wanted to recheck B12 by 6/10/22 and instructed me to take no b12 supplementation until the test, and stipulated it be done by 10a.m.

They would also retest the antibodies. I suspected that I was negative for both, but that they expected me to have one , or both.

I normally test at 12.10p.m. when doing blood tests. Although TSH highest at 9a.m., my TSH is irrelevant. All other blood tests were done at 12.10p.m. All protocols , including biotin, followed for all.

Medichecks retest, 3/10/22. Done at 9.55 a.m. No B12 for 3 weeks, as instructed. Coincidentally,I had resumed taking 4 Naproxen, anti inflammatories daily by then. I had stopped them 8/9/22, as an experiment to see if not taking them had any effect on my chronic, severe, whole body pain. G.P. keeps reviewing the prescription. As a consequence, on the retest, CRP inflammation is down, as is ferritin. As suspected, I am negative for both antibodies. I think this has confused the lab sufficiently enough to do a full retest.

Retest, Medichecks, 3/10/22: Taking 75mcg liquid levo, from 20/9/22.

TSH was 1.32 (0.27-4.2), FT4 was 14.4 (12-22), FT3 5.71 (3.1-6.8)

CRP HS: 0.33 (0-5)

Ferritin: 113 (13-150)

Folate : 19.8 (over 3.89)

Active B12: 139pmol/L (37.5-150)

Vitamin D: 124nmol/L

Thyroglobulin Antibodies: 14 , IU/mL (less than 115)

Thyroid Peroxidase Antibodies: less than 9 IU/mL ( less than 34)

NHS, Monitor My Health, blood test, 21/11/22. Taking 75mcg , liquid levo:

TSH was 0.97 (0.27-4.2), FT4 was 18.8 (12-22), FT3 was 5.9 (3.1-6.8)

I have one rapid converter and one poor converter at DIO 1, for conversion of T4 to T3 in the liver and kidneys.

I have 3 bad double mutations for thyroid:

PDE8B-TSH Signalling, ( decreases response of thyroid gland toTSH stimulation)

TSHR-Thyroid Stimulating Hormone (TSH) Receptor (Controls thyroid gland's receptivity to TSH)

TRHR-Thyrotropin Releasing Hormone (TRH) Receptor (Body's receptivity to TRH which stimulates secretion of TSH from pituitary)

I do not really feel any relief from symptoms yet, which is very worrisome as the G.P. is likely to think these are optimal, and not want to continue medication, at worst. At best. G.P. , I suspect, may not want to dose higher, despite me citing Dr.Toft's Pulse magazine article.

Endo asked G.P., NO RUSH, to check Prolactin and Cortisol at 9a.m. These were checked, 24/6/22, and took 7weeks to be released on patient access request, which receptionist said I would get really quickly, as I had waited 5 weeks for previous historical thyroid testing results. I was told verbally they were significantly high. This does not appear in the results, as the comment has been removed.

Serum Cortisol at 9a.m., 593nmol/L (133-537). It was 350, 24/2/22

Prolactin at 9a.m. , 564mU/L (0-499)

The above could be under medication as well as stress.

My thyroid genetics are for Graves/Hypo.Blue Horizon don't alert you, however, to the 10% possibility of Graves Hypo, and just refer to Graves Hyperthyroidism.

All key vitamins except ferritin are supplemented with products as per forum advised. I eat grass- fed meat and chicken from a butcher and no processed food, and am dairy free. I eat limited gluten. I know at some point I will need to see if gluten free produces a miraculous improvement. I do have a folate and B12 problem , historically, but have supplemented to optimal levels.

Because of various eye problems, including under eye puffiness, I started 200mcg selenium daily from 3/8/22. I am currently awaiting results for zinc and selenium testing from Cerascreen, before introducing zinc supplementation in case it is unnecessary. I think Grey Goose or Seaside Susie supplemented zinc and got rid of muscle pain that way. Since my muscle pain is horrendous, I bit the bullet and have done the test, hopeful that this might be a missing piece of the puzzle.

Since my conversion rate is working out at 3.18, I suspect the 3 thyroid nodules must be secreting T3??? Ft4 is 68% through the range, and FT3 75.68%. I suspect FT3 being a higher % through the range might be indicating this??? I suspect the TSH is proving a faulty HPT axis???? If I try to argue a dose increase of 25mcg, up to 100mcg, which is what my body weight indicates to be a likely dose, my FT4 might go to around 24.9??? Although the Dr. Toft article condones this in some circumstances, I wonder if I should be trying to increase to 87.5mcg??? If FT4 was allowed to go up to c. 24.9, maybe it would stop the growth of further nodules, and my true conversion rate would be revealed???

I really don't have the expertise to know if these theories are credible, or likely.

I would be extremely grateful if some of the expert members on the forum could advise on next dose to fight for, and give the justification for the advice, in simple enough terms that my G.P. would find credible. Many thanks if you've got this far.

[Wua13262348]

Should have said in my post "Central Hypo and Hashi's with muliplying nodules etc."

Thyroid genetic results are for Trab antibodies which are normally Graves Hyperthyroidism. I have a negative for TPO and Tgab antibodies. My antibodies must be Trab blocking antibodies, which is the province of Endos, and Endos probably won't test Trab unless Hyperthyroid. Hence why I said I must be in the 10% who are Graves Hypo.

I realise I have answered myself, but didn't want to use the edit button and risk losing my original long post!

[tattybogle in reply to Wua13262348]

Hi Wua .... Some thaughts / observations .

i think 'Blocking' TRab activity would logically be expected to produce a relatively high TSH result at diagnosis ( compared to hashi's). Your relatively low TSH results with below range fT4 look like central hypo. Was the TRab result pretty high or just very borderline ?

Are you thinking you have Both Central Hypothyroidism and Graves Hypo ?

Hashimoto's ~ not very clear from your post why you are mentioning this term for your condition ~based on what ? ie. since you have normal TPOab /Tgab , did the ultrasound show signs of typical hashimoto's damage .?

"Taking 75mcg liquid levo, from 20/9/22.

blood test, 21/11/22.

TSH was 0.97 (0.27-4.2), FT4 was 18.8 (12-22), FT3 was 5.9 (3.1-6.8)"

Personally , i would go cautiously with Levo increases at this point. ie 12.5mcg increase rather than 25mcg . my reasoning is :

a) Toft's advice (re . it being perfectly OK to use higher fT4 levels to get better fT3) must now be looked at in context of more recent research which looks to be showing associations between T4 levels ( both natural and from Levo ) and some kinds of cancer cell proliferation. So best to be a little cautious, and not choose have highish fT4 levels unless we have no other option.

b) Small adjustments are often enough to produce significant change in symptoms . 12.5mcg Levo is enough to make the difference for me between symptoms of bit too much / definitely too little / and just right.

c) Consider using longer timescale's than 6-8 weeks for making dose decisions .... allow a good couple of months at the least, and sometimes longer, to feel the full affect of any dose change on symptoms ... some symptoms can take much longer time to resolve than it takes for the blood result to show the new levels. Even when the dose is 'right' , improvements in some symptoms are very gradual .... (ie. ~you'll realise you feel better in 6 months, not 6 weeks )

If there has been a long period of low fT4 before treatment started , as in your case , i think you can expect some symptoms to be pretty stubborn , and take a long time to slowly improve . If this potential for 'symptom lag' is not understood , there is a danger of rushing to increase the dose too soon ,and ending up on a higher dose than is optimal for you .. and 'slightly too much' , will not make you feel well , any more than 'slightly too little' will. Symptoms of 'slightly too much' rarely present as obviously 'hyper' ,... they can feel very similar to hypo, the difference can be subtle and it takes time and methodical personal observation to know how 'over medicated' and 'undermedicated' feel for you personally . .

As a general rule when making dose decisions , it's much better to be the tortoise than the hare .... if you go up to fast you can easily miss your sweet spot without realising it .

[Wua13262348 in reply to tattybogle]

Thank you so much for responding tattybogle. I hoped you would , as you responded to a previous post some time ago, and your insight and comments struck a cord. I felt you had a real handle on the scenario. I didn't , however , feel that it would be fair, with this post, to tag you and ask for your opinion.

You ask if my TRab result is pretty high or just very borderline?

I haven't had TRab tested. It would cost £100. It is the province of an Endo to test Trab and I am on a very long waiting list to have an initial consultation with her. My G.P. has previously asked her advice, whilst awaiting an appointment. She is probably unlikely to test TRab as it is usually considered to be for Graves Hyperthyroidism, and all my results are clearly for hypothyroidism.

It is my thyroid genetic testing results that make mention of TRab, and read as follows:

TSHR-Thyroid Stimulating Hormone (TSH) Receptor: The TSHR gene plays a central role in thyroid metabolism by controlling the thyroid gland's receptivity to TSH. Variants in this gene have been linked to hyperthyroidism, particularly to Graves disease(GD).I am AA. The A allele on rs179247 has been linked to the presence of thyroid hormone receptor antibodies (TRab), associated with increased risk of developing Graves disease (GD).

TRHR-Thyrotrophin Releasing Hormone (TRH) Receptor: Responsible for the body's receptivity to TRH which stimulates the secretion of TSH from the pituitary gland. In turn, TSH stimulates the production of thyroid hormones from the thyroid gland. TRH is an important part of the negative feedback loop that ultimately regulates thyroid hormone levels. Variants have been shown to affect TSH levels. I am GG. The G allele on rs3134105 is associated with a less responsive negative feedback mechanism. Carriers of this genotype may show higher circulating TSH:T3/T4 ratio due to delayed reduction of TRH and TSH in the presence of healthy thyroid hormone levels. This may mean that the body is subjected to a less efficient response to changing thyroid hormone requirements.

PDE8B - TSH Signalling: PDE8B is found in the thyroid but not the pituitary, and is involved in TSH signalling. It is thought that the variant decreases the response of the thyroid gland to TSH stimulation. I am AA: The A allele on rs4704397 is linked to reduced thyroid sensitivity to TSH stimulation. This could result in higher TSH levels in order to produce normal levels of thyroid hormones (T4 and T3). A clinical test would show high TSH levels and normal to low thyroid hormones.

DIO1- Thyroid Hormone Activation: "D1" is largely expressed in the liver and kidneys. It is responsible for the clearance of rT3 from circulation, and for facilitating the conversion of T4 to T3 in plasma and surrounding tissue. This process requires selenium and iodine for optimum function. Here we look at 2 variants linked to poor conversion of T4 to T3 and reduced clearance of rT3. I am CT: The T allele on rs11206244 is associated with lower DIO1 activity and therefore likely decreased clearance of rT3 from circulation, and lower conversion of T4 to T3. Ensure adequate intake of iodine and selenium to support this pathway.

However, also at DIO1: I am CA: This has a positive effect. The C allele on rs2235544 is associated with increased DIO1 activity resulting in rapid conversion of FT4 to T3 (????), and reduced circulating rT3 levels which is positive for thyroid function. Ensure adequate iodine and selenium intake to support this pathway optimally.

Are you thinking you have both Central Hypothyroidism and Graves Hypo?

Yes, probably wrongly. I did read you can have both Central Hypothyroidism and Hashimoto's thyroiditis, running concurrently somewhere. The term Graves Hypo, I am associating with Central Hypo., probably wrongly.

I read about Graves Hypo, I think in:

thyroidpatients.ca/2020/04/12/the-spectrum-of-thyroid-autoimmunity/, which states "Some scientists only name 3 antibodies because it is common to join the 2 TRab (tsh receptor-blocking antibodies) together. However, the TSab and TBab have opposite effects at the tsh receptor. One causes hyper, the other hypo. Sometimes only one of them is expressed, not the other. Sometimes both are present and play a game of tug of war. In some rare people, they alternate over time. These are two extremely powerful,volatile antibodies. The blocking power of TBab can achieve 100% tsh-binding inhibition."

I think the term Graves Hypo is in that article. I got the notion from that article that mention of Graves Hyper in the thyroid genetics blood test does not apply to 100% of patients, as is implied by the narrative in the thyroid genetics results, as they refer to Graves Hyper. Using the above article as a guide, 90% of patients, rather than 100% would be subject to this. 10% could be Graves Hypo, rather than Graves Hyper. My blood results are all for hypothyroidism, and since I assumed I am likely to have antibodies, I deduced that they must be TBab, which are part of TRab. I have confirmed by blood test that I have neither TPO , nor TGab.

Endocrineweb.com states that a low T4 could be caused by a diseased thyroid gland or a non functioning pituitary gland. I do not know if the nodules are classed as diseased or not. It states that a high TSH would indicate the thyroid gland is at fault. My TSH was rising , 4.02 (0.27-4.2), although their definition of high may be c. 100.

Hashimoto's -not very clear from your post why you are mentioning this term for your condition.

I thought that the presence of increasing numbers of nodules were associated with hashi. Probably wrongly. It is very confusing. I have no idea if the thyroid ultrasounds show" typical hashimoto's damage" or not. I don't know enough . I do not know what Hashimoto's damage on a scan would look like. I had got the notion into my head that the nodules were my body's way of sustaining life because the thyroid is failing, (making T3 in preference to T4) and rather than hyper secreting T3, were secreting it in a controlled way, and that the limitations imposed by my thyroid mutations dictated this to be necessary. As I said, I'm pretty confused. The thyroid ultrasound I had done privately said:

Right lobe of thyroid gland appears normal in size and echotexture.

Left lobe of thyroid gland measures 20x26x46mm, shows two well defined predominantly solid nodules with cystic components, measuring 20x13x25mm and 8x8x12mm. No evidence of increased vascularity or calcification. Sonographic appearance is suggestive of U2 nodules. Isthmus appears normal. Submandibular glands appear normal bilaterally. No evidence of lymphadenopathy. Impression: Left lobe of thyroid gland shows two U2 nodules, measuring 20x13x25mm and 8x8x12mm.

On 16/11/22, additional small nodule on the right lobe. Per the forum , 20% of patients with Hashis do not have TPO or TGab antibodies. I am really quite confused.

Out of space, to be continued

I

[tattybogle in reply to Wua13262348]

This first bit is meant to be helpful , honest , but it will sound very blunt because it's late and i'm tired from reading all that ,so please take it as kindly as it's meant

......i think you are getting too involved in theory / assumption and confusing yourself and probably everyone else ~ (that is far too much information for anyone to hold in their head while trying to remember what the question was )

At this point it doesn't actually matter about figuring out WHY you needed Levo .. you did , and you've got it .... get the dose right and stop worrying about the why's and wherefores at the moment , because realistically you won't be able to find those answers without some test results that you don't currently have... ... and sometimes even with all the information , it's never clear why someone went hypo , or what is driving their T4;T3 ratio .

Knowing what happened to your thyroid , or how you ended up with a low T4 ,or why your fT3 level is still so good, or if you have Hashi's or not , or Blocking TRab or not , won't change the fact you clearly needed to take replacement thyroid hormone, .. The treatment is the same whatever the cause ... replace the low thyroid hormones and try to find the dose where you feel better.

If you want to know if you have TRab .. or to find out if your nodules are hyperfunctioning .....there are tests . Without them ,there is no point speculating about what you think you might have.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Some thoughts i noted down earlier while i they rambled through my bedtime brain ... i will look at them again tomorrow to see if anything i've written makes sense.

Graves Hypo (caused by 'blocking' TRab) has no relationship to Central hypo .... Central hypo is not caused by antibodies ... it's a pituitary or hypothalamus problem.

(Hashimoto's is not related to Central hypo either )

it IS theoretically possible to have a Central hypo problem (pituitary/hypothalamus) AND an auto-immune thyroid problem ( Hashimoto's / Ord's / Graves Hyper / Graves Hypo) at same time ,..... but how that works in practice and what effects it would have on TSH / FT4 /fT3 levels is a bit hard to get my head round.

An 'official' diagnosis of Central hypo would make make life easier , as it means GP should ignore the TSH level for dosing purposes, and just focus on the T4 / T3 levels ( which is what we all want ) but i don't know if they'll ever give you one as your TSH did (eventually!) rise ... (by a pathetic amount !)

"and since I assumed I am likely to have antibodies, I deduced that they must be TBab, which are part of TRab".

i'm not really sure you can assume you've got any sort of TRab unless you actually find any by testing . It's a bit of a leap of faith from having the gene polymorphisms 'linked to the presence of 'TRab ,to actually having any .

Nodules are not necessarily a problem ..lots of healthy people would find them if they looked, and increasing in number is presumably likely to happen with age .. ( i think?) don't think they are necessarily a sign of hashimoto's. Hashimoto's damage can be seen on ultrasound if it's bad enough... it would presumably be noted on sonographers report if it had been seen at ultrasound .

"I had got the notion into my head that the nodules were my body's way of sustaining life because the thyroid is failing, (making T3 in preference to T4) and rather than hyper secreting T3, were secreting it in a controlled way, and that the limitations imposed by my thyroid mutations dictated this to be necessary."

... um ..i think you are joining up two ( or three) unrelated ideas here... yes, thyroid does increase ratio of T3;T4 when it's failing in hypothyroidism (the higher TSH causes this) ... and yes ,hyper functioning nodules can make steady amounts of T4/T3 and cause mild hyperthyroidism that has nothing to do with Graves . Scans can show where nodules are producing more hormone than the surrounding thyroid tissue, but without having that scan ,you can't assume a nodule is doing anything at all, ....most nodules are not doing anything.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

'Sailing By" has just come on the radio , which means it's my bedtime .

x

[Wua13262348 in reply to tattybogle]

Thank you, you deserve a medal. It's a personality trait, I'm afraid. I tie myself in knots. x

[Wua13262348 in reply to tattybogle]

Think i ran out of space replying re. comments on "Central hypo and Hashi, etc"

I am very grateful for the insight and points you have made , a),b)and c), and "as a general rule". They make perfect sense and I will try to implement them, if G.P. is willing.

Have you seen FT3 as a higher % through the range , than FT4 before? FT3 is 75.68%, and FT4 is 68%. Can you draw any conclusions from this? I have made a note that : eje.bioscientifica.com:states that the C allele , rs2235544 in DIO1 which I have, results in slightly higher FT3 and lower FT4. In addition, in T4 treated hypothyroid patients, the FT3/FT4 ratio is higher in subjects who are homozygote (2 parents) for this SNP, but not related to persistent symptoms. Is this saying FT3 higher % through the range than FT4 like me? I am not homozygote, but heterozygous (1 parent). Surely my conversion rate isn't 3.18?

Ah, I have just noticed that I have noted that Lalaloot has FT4 at 50% and FT3 at 72%.

I ran out of oral H.R.T. tablets which I have taken for years (Kliofem 2mg/1mg, estradiol/norethisterone acetate ) in August (woops, just noticed they contain lactose). Since I have read on the forum that this normally requires that a higher dose of levothyroxine is necessary, I did not attempt to renew the prescription. I am having frequent sweating, where the back of my head and neck and face, are soaking wet. My body temperature is running hotter than normal, which is most unpleasant, but very good for my energy bill. My G.P. associates increased body temperature with Hyper, therefore I have alerted her to this and the fact that all my blood results are hypo. I realise that all my endocrine hormones need to be checked by the Endo, and I may have a clinical need for H.R.T., although thyroid can also be the cause.

I have been taking 75mcg liquid levo since 20/9/22. Do you recommend I hold this dose for 6 months, and test again after dosing at 75mcg for 6 mths, or hold for 6 months and test, say, 3 monthly?

Your advice highly appreciated. Many thanks.

[tattybogle in reply to Wua13262348]

ok , so yes....as you know , endo needs to follow up prolactin /cortisol... (preferably after reading your full results and engaging brain !... doesn't sound like they've been very helpful so far) and you may want to consider re-introducing HRT,... doesn't seem any point in prolonging the suffering if you think it will improve some symptoms ..... if doing so means you then need a Levo dose increase , so be it.

regarding 'why is your T3 higher than you expect ?':

.... if your nodules were putting out a slightly higher level of T3 ,than that's actually helpful isn't it .. it's keeping your T3 level good.

... or perhaps you just have a thyroid that produces a high ratio of T3:T4 anyway .... the natural variation from one person to another is pretty large , not everyone produces 80% T4 :20% T3 , some people naturally have much higher , some have much lower Tania Smith discusses this in one of her articles about PILO et al. You wouldn't know this for sure unless you knew what your T4/T3 levels were before anything went wrong , but it's a possibility.

.... or your cells just have really good conversion of T4 to T3 at the moment.

TSH 0.97(0.27-4.2)... FT4: 18.8 (12 - 22) 68 % ... FT3: 5.9 ( 3.1 - 6.8) 75 % thyroid.dopiaza.org/

Since these levels look pretty good on paper ,and since it's not that long (Sept) since T4 was very low @12 ish..., i'd be tempted to say to GP you'll stick at 75mcg and retest in another 6 weeks (Jan) , to see of levels change ,, and to see if symptoms start to improve ..... at that point if no improvement in symptoms ... request 12.5mcg increase to 87.5mcg.. and give that 2/3 months to see effect . (not really sure at what point i'd try re-introducing HRT ? .. possibly now ?)

Some members would probably advise requesting increase now, to 87.5mcg, or even 100mcg . And there is a bit of 'room ' in those result for a small increase.... But if you push to go up now and you don't feel better , or feel worse , you'll never know what would have happened if you just waited a bit longer and re-introduced HRT...... (and since TSH is already fairly low your GP may decide you're just asking for more and more for the sake of it, and your symptoms are not thyroid related ...,depends if GP is subscribing to the idea you have central hypo or not ... but either way they may be getting a bit uncomfortable with increases at this point , due to fT3 being @75%)

[Wua13262348 in reply to tattybogle]

Genius! Can't thank you enough.

All points made are spot on. Levels on paper will look ideal to G.P. and Endo, as you rightly point out, which is a problem as I don't really feel an improvement in symptoms, which is a worry for me.

It's a case of trying to hang on to the dose I have, quoting the reasoning you've supplied, and making clear I will continue to test and update them. I also need to try to avoid being told that if I don't feel better with this dose and these blood results, then it's not a thyroid problem.

Any dosing request beyond 75mcg will definately hit a brick wall. The Endo wanted me off a trial of levo at only 25mcg. One G.P. said I shouldn't be on levo at all, with an FT4 of 5.5 and FT3 of 6.5! Because TSH is in range, she was clueless that there was a problem.

No G.P. has increased my dose from 25mcg as such. I have been lettering the G.P.s and providing blood and genetic results, by handing them in at reception. You need to have been given prior instruction/ permission to email them!

I have justified the reason for increasing to 75mcg, by quoting Dr. Toft in the Pulse Magazine article , and saying that I will just increase my dose now unless I hear from them to the contrary. I also made clear that had I not been rendered speechless by being told by a G.P. that I have had no former dealings with, that I should not be on levo at all, I would have asked for her justification for that remark . I think it helps that Dr. Toft worked in Scotland, and I am in Scotland also. Since FT4 was only 7% through the range, and FT3 was 74.86%, I could argue that they were clearly out of balance, and the FT4 clearly much too low.

I eventually had to bulldoze my way up to 50mcg by stating I was excessively below range at 8.4 for FT4, and that I would increase my dose, unless I heard from them otherwise.

I have pointed out to them in one of my letters that it must be clearly understood, going forward, that my TSH is irrelevant and needs to be ignored, as in Central Hypothyroidism, the TSH is unreliable , as the HPT axis is faulty. Since this is usually caused by a pituitary tumour, and as my optician suspected a pituitary tumour in 2014, and my blood results from 2020 onwards are also suggestive of this, this is a bit too much of a coincidence. My thyroid was tested in 2014 and they have withheld the results, as I believe they suggest something is off. I have asked a G.P. verbally what my thyroid results were in 2014, and she suddenly had to be somewhere else. Late for a very important date. A Patient Access request, revealed that reception can access no information for the year 2014. I am not pursuing this line of enquiry, as I do not think it is going to be helpful to do so. I will ask the Endo if I ever do actually see her.

The first FT4 result I've ever had was 17/2/20, when it was 10.6. The TSH 17/2/20 was 1.84 (0.27-4.2). With a TSH of 1.84, I don't believe the blood lab would provide an FT4, unless the previous thyroid test, which was in 2014, was well dodgy.

Mistakes made in the past may be giving me some leeway. I have waited 5weeks, and 7 weeks , respectively, for historical thyroid and vitamin results via written patient access requests. 7 weeks for 2 results, (prolactin and cortisol), on one piece of paper, which reception said I would get very quickly, which turned out to be doctored to remove "significantly high" from the comments, before being released to me. I had to sign a form, stating if for own use, or for a solicitor.

I will leave the question of HRT well alone for the present. It keeps it simple. It saves me and them getting tied up in knots. My last supply of HRT was from a G.P. not known to me, who wanted to take me off it due to age. It would probably be another battle I don't need at the moment, to try to reinstate it. I also don't want what I had before as I notice now it had lactose in it. Also, if I feel that I need to increase levo at a future date, restarting HRT is a possible reason to use for increasing levo. I would also like the Endo to check hormones related to this, to see if a clinical need is identified. Symptoms I believed to be due to menopause, may have been thyroid related. She should check , but probably won't.

My gut reaction is to do exactly what you suggest as regards all else. You've read the situation perfectly. What you suggest will come across as reasonable, measured, and conservative. I think that this is the only course of action that my G.P. will find acceptable . There is no chance of a dose increase at this point on the basis of my latest results, Dr.Toft or not.

I value your advice highly, and am more than happy to follow it, as the reasons you have stated make good sense. I didn't expect FT4 would have jumped quite that much.

I am also mindful that by taking liquid levo, I may be getting 100% absorbency. Since I have IBS , 75mcg liquid levo may well be the equivalent of a 100mcg tablet for me. My bodyweight suggests a dose of 100mcg.

As far as whether the G.P. is subscribing to the idea I have Central Hypothyroidism or not........ By providing 2 sets of genetic results relating to thyroid, which they are unlikely to understand or be familiar with, they probably won't want to rule it out completely. I think it will be more credible to them than it first was.

I have explained how I got my dose increases in case it is of help to any forum members having problems in this regard. It definately helps that it avoids engaging verbally with a G.P., especially if you have "white coat syndrome".

Paying for your own blood tests has the definite advantage of knowing your results before your G.P., rather than the other way round. It avoids results being "doctored" and withheld, and inappropriately interpreted . (folate 0.1 into the range, okay)This allows you to get advice and plan your strategy , as to what they mean, and what ideally you need, or want done about them. Lettering the G.P. is to their advantage as well as your own, as it allows them the opportunity not to be blind-sided and put on the spot.

I should get zinc and magnesium testing results by Friday.

I shall hand deliver them and the thyroid results for 21/11/11, with a covering letter to the surgery requesting my treatment continues, as I suggest. Last time the newest G.P. decided an appointment is necessary to do this.

Fingers crossed.

[Hedgeree]

Hi Wua13262384,

I agree with Tattybogle with going low and slow with increases in levo; tortoise not hare.

I've only been prescribed levo since August 2022 after partial thyroidectomy when my TSH jumped from low in range to over 5 and still below range FT4. I was never able to get a Central hypo diagnosis despite being symptomatic for many years.

What I have found is that I'm very sensitive to the levo. With possibly being hypo for many years and with suggestions from the forum I decided to go very slowly and I am able to tolerate it that way. When I got impatient and tried to increase quicker I got a lot of heart symptoms that were quite scary but diminished when I went back to the lower amount.

I have an appointment with the ENT endocrine nurse soon and I can imagine she won't be happy with how I've been taking the levo. But I decided to listen to what my body is telling me.

Also I split my dose into three as when I took it all at once I felt increased hypo symptoms later and was back to being sofa bound for the afternoon. I'm also intolerant of lactose and mannitol.

Glad you have a supportive gp. Hope you find the answers you need.

Best wishes.

[Wua13262348 in reply to Hedgeree]

Thank you for your input, Hedgeree. I appreciate you taking time to reply and give support and guidance. Sorry to hear you are finding it so tough and slow going. From what I have read on the forum, it seems there are many of us who believe it is Central Hypo that they have. Everyone seems to be refused a diagnosis, unless a pituitary tumour is found, yet there are other causes listed, such as genetic brain disease.

I can loosely link it to genetic brain disease, though through genetic variants of uncertain significance for the brain diseases. I don't have the brain diseases, as such, but 2 uncles, on my father's side, definately did though, and they are rare ones. One uncle had dementia from age 26.

My mother died young , and her death was caused by arachnoid brain hemorrhage, which seems to be under the umbrella of brain disease, for the purposes of Central Hypo. This will be a common cause of death. A very popular Rangers player who lived locally died aged 39, from this. I was given a double VUS for one of the brain diseases because I inherited one identical mutation from my mother too, associated with a very rare disease, which she didn't actually have. The double VUS is , genetically, accepted to give you a mild enzyme deficiency for galactose, which is glucose and lactose. You have a problem with lactose.

It is thought that 60-66% of the population may carry this mutation, per the comments on my genetic testing report. It is a pseudodeficiency allele. You won't be able to get genetically tested for it, but I don't know whether the" 23 and me" testing, and running results through data bases would identify if you carry the common mutation or not. (I don't understand the process) If you did have it , it doesn't mean you have the actual disease . If you have a double mutation it does mean you have the enzyme deficiency for galactose.

I have a single VUS for an enzyme deficiency for mannose, from which mannitol is derived. I do not have the rare disease associated with it. Mannitol does not agree with you either.

These rare diseases are leukodystrophies/lysosomal storage disorders. These are basically caused by enzyme deficiences to things like lactose, glucose, and mannose,.(from which mannitol is derived)

Based on this reasoning, I have a THEORY that many of us who have blood results for Central Hypo, may have genetic enzyme deficiences, ASSOCIATED WITH genetic brain diseases, without actually having the actual fullblown brain disease, but causing Central Hypo.

My G.P. asked me if I had a copy of the genetic report re.this, as I mentioned it to get a lactose, and mannitol free form of levo prescribed, eventually. It is possible that it might have been the Endo who wanted to see it.

I can guarantee she will not have come across this before.

I will go the tortoise route: see my reply to Tattybogle.

Thanks again for your advice, and hope things improve for you soon. Personally, I find G.P.s obstructive, ill informed and not supportive, in the least. I have "white coat syndrome" as a result.

I probably won't get anywhere either, but not for the want of trying. Without the help, support and advice from the forum I would have no thyroid medication at all.

[Hedgeree in reply to Wua13262348]

That's very interesting Wua13262348.

I've not had any genetic testing done but may consider it at a later date due to cost as I think I understand it's quite expensive.

Yes lactose causes me many digestive issues. Also my reaction to mannitol has in the past been very rapid and unpleasant so I don't have that anymore or other sugar alcohols just in case I react in the same way.

I think I may have misunderstood one of your replies as I thought you had an understanding GP. I also have started to write letters to the gp and practice manager when I need blood tests or when I was trying to get an endo referral as continually told 'nothing wrong with your thyroid, come back next year for tests'. Dealing with GP's causes me much anxiety too.

I'm also making slow but good progress so far with the suggestions and support of this forum.

[Wua13262348 in reply to Hedgeree]

Hi Hedgeree. I've looked back on your previous posts and find we have replied to each other on the forum in the past. We seem to have been asking for answers and explanations to the same questions.

It would appear that you are on levo tablets still, and tried to get Glenmark, but by then it had been discontinued in the U.K. It is a great pity that you didn't have even a brief opportunity to see if you would have tolerated them. I see that you have been on a long term plant- based and vegan diet, so your core vitamins may not be optimal, which will likely not help you tolerate levo, either.

The only useful advice I can offer which may make a marked difference for you would be to try your best to get a TRIAL of liquid levo. It is very expensive, difficult to get prescribed, and there is a nationwide supply problem , at the moment, so difficult to obtain even if you do get it prescribed! The last thing you want to hear, I know, is something else you need to fight for.

You have a problem with lactose and mannitol, as do I.

The Wockhardt tablets you are taking have both lactose and maize starch in them. If you have an irritable bowel, which you likely do, you also need to avoid maize starch. Maize is sometimes listed as corn starch, or maltitol.

If you have a diagnosis of IBS or similar bowel problem, maize/corn starch/maltitol, is unsuitable for you, as it causes diarrhoea, as it draws water into the digestive tract by osmosis.

If you ask for a TRIAL of liquid levo, don't accept the Wockhardt liquid. It contains maltitol.

I was forced to accept and take a bottle of this , which I was able to get when nothing else was available, only because it was in stock at the pharmacy, because I had previously refused it. The first day I took it my bowels almost voided whilst queuing in the pharmacy. Lots of wind and bloating and gurgling. I had a thumping sore head every day I took it. I was very congested and sounded as if I had a dreadful cold. I lost almost all hearing in my left ear.( an intermittent problem which has come and gone for at least 30 years, which will be thyroid related)

I would recommend Teva liquid as the preferred option, though Brillpharma liquid is acceptable for me. Liquid would also be easy to take spread out in mini doses throughout the day, as this seems to be your preferred way of trying to tolerate your thyroid medication.

Liquid levo may be a breakthrough for you. If you can't persuade the Endo to prescribe it, (supposed to need to be iniated by an Endo), even on a trial basis, you could contact your MSP or MP as a last resort. If, and when , you can summon up the energy or b....y-mindedness to do so.

With Best Wishes.

[Hedgeree in reply to Wua13262348]

Hi Wua13262348,Thanks for taking the time to read through my posts. It is much appreciated!

Yes I was disappointed that I didn't get to try Glenmark but glad that I didn't start on it and then find it was being discontinued.

I had to stop taking Wockhart as the digestive side effects were becoming extreme and no longer tolerable for me. I managed to get Aristo and even though it contains maize starch I'm doing much better on that although I am going very low and slow with the dosage as finding taking levo itself too much for my metabolism.

I've been focused on vitamin levels, currently vitamin D and ferritin as hoping that as these levels rise I'll be able to tolerate levo more. Although I was only prescribed levo in August 2022 after a partial thyroidectomy I beleive I've been hypothyroid for many years previously.

The pharmacist said the gp has a duty of care....I just smiled when she said this but I will consider liquid levo though really not keen on the idea of the parabens contained and ingesting those? But I'll see how I get on with Aristo.

I don't really have an endo. Although I was referred eventually and got lots of tests done then two days before my operation they cancelled my 2nd appointment. Not very helpful and caused me to get in a state as I very nearly cancelled my partial thyroidectomy. Thankfully my ENT surgeon and her team are brilliant. The ENT endocrine nurse was the person to write to my gp and got me prescribed Levo.

My GP has always said there was nothing wrong with my thyroid so it would be another battle if I was to try to get liquid levo.

Thanks again for posting.

[Wua13262348 in reply to Hedgeree]

I had a thought that might be something to consider. There is a large independent chemist chain relatively near to me. They say they supply people worldwide, and mention postal customers in Hong Kong .They have installed a hyperbaric oxygen chamber in one of their shops, in response to possible demand from people with long covid.

Anyhow, I notice they have a prescribing pharmacist. With Xmas imminent , I wondered if family members may be able to club together to buy an appointment with her to prescribe a bottle of Teva liquid levo so that you had the opportunity to see if it would be worth fighting for or not. I think the prescribing pharmacist would be £25 or £50??? A bottle of 50mcg liquid levo is c.£95, 100mcg c.£135, I think. Not certain.

You would be able to take it in as many tiny doses as you wished, and take the dose from any strength bottle. Whatever is most economical. Some, if not all, bottles need to be used in 30 days.

I think Thyroid uk have lists of prescribing pharmacies. The one I am talking about is not on the list.

They are Dickson's Chemist, Rutherglen, Scotland, if this is of any interest to you. They have an internet site.

I know it is expensive, but the best present anyone could give you for Xmas would be to feel better than you do now, and if you knew if it definately helped you or not, would be a morale booster for the future.

The endo nurse would fight for you.

My G.P. too has always said there is nothing wrong with my thyroid too.

Hope you feel better soon.

[Hedgeree in reply to Wua13262348]

Thanks for all the info Wua13262348 I will definitely consider it. Though due a blood test again in about 5 or 6 weeks so currently sticking with Aristo and the same dose and doing ok so far.

Thank you for thinking of me😊

Best wishes.