Hello - first off, sorry for making two posts in quick succession asking for help!
As I mentioned in my first question about an Endo Department, there has been a 'twist' in my Hashi's (I actually have Ord's: autoimmune thyroid disease with no goitre) story...
Over the course of several blood tests, extremely high prolactin levels were noticed (over 2200 when upper range value is usually around 400). My GP proposed a contrast MRI to take a look at my pituitary. Results of the MRI revealed multiple pituitary adenomas - as expected and not of great concern... but also "bright areas of lesions on both side of the brain suggesting demyelination and indicative of MS". As a result, I have a concurrent NHS referral to the Neurology Department at The Countess of Chester as well as an Endo referral.
So, please can I ask for any information from folks who have both hypothyroidism AND MS?
I really don't know what to think - it's a bit of a shock tbh. I'm mainly wondering how to disentangle symptoms of each, and maybe which is more "important" to address. I find myself in the unusual situation of being somewhat at a loss about what to ask...
Any insights, comments, or experiences anyone would be happy to share would be most appreciated! I'd be happy to receive DMs if posting a reply on this question is not suitable/comfortable/appropriate.
Thank you! 🙏
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ERIC107
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I updated my profile last month... I'm on 75 micrograms Levo, which is pretty close to the "rule of thumb" 1.6 x weight in kg as I'm tiny (just under 49 kg)! However, the numbers suggest that this is still under treated.
TSH: 92.1% (Medichecks) / 94.7% (GP)
T4: 39% (Medichecks & GP)
T3: 21.6% (Medichecks)
I take D3 + K2 (M7) Better You spray, Igennus Super B-complex, Mg glycinate, Fe, omega-3, -6, -9, CoQ10, and collagen.
Vit. D: 89.0 (19.5% - Medichecks) - I know this is low, but it's creeping up slowly (was originally 69)
Active Vit. B12: >150 (>100% - Medichecks)
Folate: 5.37 (6.5% - Medichecks) - still very low... I've just changed from B-complex with folic acid to one with methyl folate, so hopefully this will start to improve
Ferritin: 36.1 (16.9% - Medichecks) - also still low, but is also creeping up very slowly (was originally 3.16%)
[All test values from 04 Jan (Medichecks) and 05 Jan (GP) - following recommended procedures exactly on both days]
I seem to have an absorption problem (and possibly a conversion problem, given the gap between T4 and T3 values) as I've increased my Levo twice (25 -> 50 -> 75) and my T4 is actually DECREASING at each blood test! I appreciate that my thyroid hormones and certain of the vitamin values would benefit from improvement.
Very interesting to read of your experience where the neurologist pushed for thyroid improvement - I, very much, have fingers crossed for that. The MRI scan showed demyelination on both sides of my brain that, apparently, strongly indicates MS... but I would be DELIGHTED if it was not the case.
Ah - yes... sorry, forgot to mention - I'm not dairy free (the thought fills me with dread - I LOVE cheese!) but I am gluten free.
The GF has been helpful, I think. I never had the coeliac test that's recommended on first diagnosis of Ord's, went GF, then decided I'd re-gluten and ask for the test... but it was just too unpleasant as soon as I was back consuming gluten so stopped again after about 7 - 10 days, and I'm now back fully GF.
I was extremely reluctant to go dairy free. But (like gluten) it has been astounding improvement and plant based “cheese “ an acceptable alternative on spag Bol or Shep Pie etc.
My prolactin is over range, but only high 500s. I was told by the Endo department they are unconcerned unless in the thousands, like yours. I believe I must have a prolactinoma or adenoma as 10% of them secrete growth hormone. My feet , as an adult, are 3 full sizes larger. I would say that is definately caused by excess growth hormone secretion .I had blood results pointing to a pituitary tumour, too. I think , when hypothyroid, all, or most of us have high prolactin. They know that if prolactin is in the 1000s there will be an adenoma somewhere. Probably needs to be in excess of 2000 before they will take any notice.
I have , over the years, been experiencing what I consider to be demyelination issues, to the extent that I had to have spinal surgery to free my sciatic nerve, firmly trapped for at least 6 or 7 years. My MRI scan of the brain showed white matter changes which I believe they would have found 30 odd years ago, had they looked. Now , they are being written off as age related. White matter is myelin. I just got a letter , no explanation or discussion.
I researched Prolactin, and went down a rabbit hole and discovered that Prolactin and myelination are very much related. Usually when researching prolactin they just tend to mention lactation (milk production).
It would seem , from what I have read, that Prolactinomas can be treated with dopamine agonists, rather than surgery, as a possible course of treatment. There was a t.v. programme. The title was something like, "Extraordinary illnesses or extraordinary people with extraordinary illnesses." There was an episode about 2 young boys, who were brothers, in somewhere like Persia. At nightfall, until sunrise, each day, neither could move or walk. A geneticist thought that the condition might respond to dopamine. They were given half a dopamine tablet or dopamine agonist tablet, to see if it had any effect. It did . Instead of lying motionless, unable to move, they were out and about . I think they went out for a MacDonalds. You might be able to get it on catch up tv.
M.S. is demyelination of the nerves, where the myelin sheath encasing nerves , is faulty. Prolactin affects myelin. I would imagine that if they are able to reduce the levels of prolactin being produced, then it will have a positive effect on your myelin.
It was a long time ago I was researching it. If you google "dopamine agonists prolactin" you'll see that they are used to reduce prolactin levels because they make the pituitary produce dopamine, and this influence on the dopamine receptors, reduces prolactin levels.
Ultimately, Prolactin is associated with the pituitary /hypothalamus . Only 2 hormones are produced from the posterior lobe of the pituitary. They are adh(anti diuretic hormone) ,now renamed as arginine vasopressin and Oxytocin. All others, including Prolactin, come from the anterior lobe of the pituitary. The pituitary is a very small gland attached to the brain. It also controls the thyroid and all other endocrine systems. Most probably, your thyroid and m.s. problem are both caused by your pituitary.
I would ask if they propose to treat you with dopamine agonists. Some are better than others, from what I can remember . I would research it to make sure they don't offer you the cheapest option rather than the best option available to you.
Thank you very much indeed Wua13262348 for taking the time to write your incredibly detailed reply - much appreciated! Sorry to read of your demyelination problems too - I hope things have improved for you now.
I also found similar information about dopamine... not sure how I feel about it as I'd only previously heard about it being used to treat Parkinson's disease.
However, I did not know about the link between prolactin and myelin - that's very interesting and helpful information. The pituitary investigation was the original reason for the MRI - and did, indeed, reveal multiple adenomas. I have parallel referrals to Endocrinology and Neurology departments at the same hospital - Endo wait list currently 9 weeks and Neuro wait list currently 19 weeks (apparently, the shortest waiting lists in my area)... so nothing will happen imminently. I will research based on your advice and information and, hopefully, go somewhat informed when I eventually get seen.
The tv programme I mentioned with the 2 young boys who now take a half a tablet a day- the geneticist did say he usually uses the tablet for people with Parkinson's, as you say. I deliberately left out that bit in case it freaked you out. I definately didn't want you to think you had Parkinson's. The Geneticist just re-purposed the drug based on what he thought might help their symptoms. I think the boys have a genetic mutation.
I doubt if I would be able to find the rabbit hole I went down again that mentioned the relationship with prolactin and the myelin sheath. That is something I would like to understand more about. Perhaps the neurologist would be able to cast light on it.
A word of warning for you since your prolactin is so high. A short time ago, 12/1/24 , I took one Turmeric Curcumin tablet. Supposed to be good for inflammation etc. The next morning I coughed up blood. I didn't take any more, and coughed up blood at exactly the same time , 10.30a.m., the next morning. Plus , this time, my nose also started bleeding. I googled to see if there would be any reason for the tablet to be implicated in this. It turns out that it works by decreasing intra cellular PROLACTIN. Think blood clotting involved. I would have thought it would therefore be beneficial if it reduces it, and maybe what I coughed up needed to come up???? But:..........
Exactly a year earlier, on 12/1/23, I passed blood in my urine for the very first and only time. On this occasion, I had supplemented a single drop of sublingual retinol palmitate type Vitamin A for 6 days running.I am mentioning this as you may use face cream enriched with vitamin A retinol. I read something tonight which I can't find again which was linking vitamin A retinol and prolactin. So I do think the previous 6 day running , 1 drop of Retinol palmitate Vitamin A was responsible was the blood in my urine, Vitamin A , I know, really shouldn't be overdone. I took the recommended dose. I took it to try to alleviate eye symptoms.
The Endo should be checking all your endocrine hormones since they have proof of adenomas on your pituitary. If you look up "intra cellular prolactin" it suggests that prolactin serves and assists in many more functions and processes than an ordinary google of prolactin brings up. Hopefully, a tablet may make all the difference to you.
I was reading about drug companies, and it seems that in 2016 the drugs company who made the injectable to test the adrenals (synacthen) was taken over , and the new company decided to stop producing synacthen. The NHS couldn't do synacthen testing because of this. The company has now , either reintroduced it, or are going to . It has been repurposed , however, and licensed for gout!
As far as myelination goes, you probably know that you need to take high dose methylcobalamin Vitamin B12. It is the one thing which will regenerate the myelin sheath, if anything can. Some sources say it will, some nothing will. I have read that serum B12 would need to be at about 1000 as a level to aim for.
Thank you Wua13262348 - your follow-up reply is equally as informative!
Off the back of your first reply, I googled "prolactin demyelination" and found some informative info. in a paper in the journal 'Nature Reviews Endocrinology', so I've paid for a 30-day subscription and will download everything that seems interesting/relevant to prolactin and/or (de)myelination... just some light reading 😂 From a first glance through everything, prolactin really does seem to be very influential in many more ways than just the lactation aspect - exactly as you say!
Fascinating what you mentioned about the turmeric/curcumin tablet - I currently take ACV that has turmeric in it (in attempt to help with digestion/absorption)... no obvious bleeding issues to date, but very useful information and something I will keep an eye out for.
I've been pretty good about keeping my B12 high as my dad has pernicious anaemia and I have had chronically low levels in the past, but I will make sure to keep on top of it.
And - thank you for your good wishes, and excellent information.
ncbi.nlm.nih.gov/pmc/articlesPMC3853872/ is a must read for you. Plenty of mediators of central, pituitary and peripheral origin take part in regulating PROLACTIN SECRETION through direct and indirect effect on lactotroph cells.
FOR DIFFERENCES OF CIRCADIAN RHYTHMS BETWEEN MALES AND FEMALES OF PROLACTIN (FOR MALE FORUM MEMBERS AS DIFFERENT FROM PREGNANT AND NON PREGNANT WOMEN)- see the following 2 sites. Could you tag HELVELLA, helvella
JIMH111 (he may already be aware of the cytokine angle), and any other males you can think of, as the blue highlight thing is confusing to me. I'm not techy. jimh111
ncbi.nlm.nih.gov>articlesPMC1785821 is Circadian Periodicity of Serum Prolactin Concentration In Man, AND themenshealthclinic.co.uk/prolactin-mans-friend-or-foe/
rep.bioscientifica.com/view /journals/rep/140/5/643.xml. Prolactin secretion patterns full of good info.
There was a site I can't find again. A very lengthy reply I wrote yesterday did not send due to a network error. The site was for an excert from an endocrinology book, written , I think, in 1985, and might be on pages 60-62 12 , City of Minneapolis and the publisher was, KARGER??? It had to be paid to access and was about Prolactin in Hypothyroidism, Hyperthyroidism and Normal Population.
ScienceDirect.com states that Prolactin regulates pain response.
I discovered a lot more about Prolactin but need to rely on memory as a network error erased it. You say you are a long distance runner and exercise raises prolactin, as does fasting and prolonged stress. Ferritin is mega important and your ferritin very low. ima.org.il>IMAJ is about Ferritin and Prolactin Levels in Multiple Sclerosis. I didn't read a lot of this as the fact that you have had very low ferritin (12) , vit D, folate and vit B12 is hugely, hugely relevant. Once these are corrected and maintained at an optimal level, keeping your B12 high/over range with methylcobalamin which is necessary for myelin, this might be transformative re. the M.S. angle. We can but hope.
One of the articles talks about prolactin being 'big' OR 'big-big' with high immunogenesis proportion BUT POOR OR NO BIOLOGICAL EFFECT. States macro prolactinomas are rarely active but REGISTER IN BLOOD ASSAYS, BUT HAVE NO SYMPTOMS.
I've made some notes that OXYTOCIN( posterior lobe of pituitary, a love , emotional and bonding hormone) is a crucial Prolactin-releasing factor. DOPAMINE secretes Prolactin and inhibits it. Light/dark cycle entrains prolactin secretion, and controversial whether follows sleep/wakening cycle or circadian rhythm. It is thought to rise during nocturnal sleep and fall rapidly on wakening. Prolactin in humans, is produced by NUMEROUS EXTRAPITUITARY SITES WHERE REGULATED BY LOCAL FACTORS AND PREDOMINANTLY ACTS AS A CYTOKINE, affecting growth of all blood cells and other cells that help the body's immune and inflammatory responses. Severe pituitary insufficiency would be unlikely to matter where Prolactin production and maintaining functions are concerned. Local Prolactin secretion has specific functions for STEROIDOGENESIS (processes by which cholesterol is converted to steroid hormones) which is MITOCHONDRIAL, as occurs in the ENDOPLASMIC RETICULUM and MITOCHONDRION and involved in HOMEOSTASIS and HYPERTENSION, obesity, fertility and reproduction and disorders of sexual differentiation.
I don't know if the following is nonsense or not. I'm struggling to understand the true significance of the information above. Its a suspicion, and not based on any great understanding of the subject, BUT:
Does it make sense to regard Prolactin as being a gatekeeper in the sense that it decides what gets inside a cell or not or what is done with it when it enters, to exert checks and balances to maintain homeostasis in the body? The mitochondria are regulating the metabolic activity of the cell to create energy?. Could Prolactin be the decision maker of whether thyroid hormone enters a cell or not? If have a neurometabolic mutation would this not exert its influence inside the cell? Could this be a reason for thyroid hormone resistance as experienced by DippyDame and Greygoose? Probably total nonsense.
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So cross with GP! But so confused with blood results and how I feel.
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