Hashi's with hypo symptoms but no treatment offered - Please help!

[MaxiFrustrated]

Stumped about which way to go and considering self-medication.

Here's me in as small a nutshell as I can muster:

April 2013 - Hashimoto's diagnosis (Switzerland)

TPO - 535.5 kUl/l (<5.6)

TgAB - 46.7 kUl/l (<4.1)

TSH 3.47 (0.3 - 4.2)

No treatment - endo suggests "wait and see"

February 2014, consult GP (London), referral to new Endo - must wait 7 wks for appt.

Symptoms worsening:

crushing fatigue

extreme bloating, frequent diarrhea

sudden weight gain of 2 stone plus in five months on 1200-1500 healthy calories

sudden spike in cholesterol - 7.3 when usually 4.5

low pulse

morning body temp 35c - 35.7c,

puffy face, upper arms, legs ( feel pregnant-swollen )

outer eyebrows fast disappearing, hair brittle

acute cold intolerance

pain/numbness in outer toes of one foot

March 2014 bloods

TSH - 2.47 mu/L (0.3 - 4.2)

FT4 - 11.2 pmol/L (9 - 23)

FT3 - 4.1 pmol/L (2.5 - 5.7)

TPO - 498 u/mL (0 - 75)

March 2014 - consult private, integrative medicine doctor while wait to see endo Start Nutri Thyroid (hormone-free powdered bovine glandular), T-Convert, Thyro Complex

Quit gluten, wheat, sugar, alcohol

Quit all processed foods bar gluten-free oat and rice cakes.

Within two weeks, feel energy boost of supplements.

Within a month, feel bloating subside, a likely benefit of going gluten/wheat free. Resume exercising: 5 sessions per week of aqua aerobics, bodypump, yoga, pilates, cardio (treadmill + X-trainer)

May - Endo finds thyroid ultrasound normal but fatty liver discovered (a first) cortisol overnight test normal

Vitamin D liquid prescribed as level 40

Ferritin of 47 judged normal by endo (I challenge but get nowhere)

May 8th bloods after two months on supplements and gluten+wheat free :

TSH - 0.54 mu/L (0.3 - 4.2)

FT4 - 12.1 pmol/L (9 - 24)

FT3 - 5.3 pmol/L (2.5 - 5.7)

TPO - 206 u/mL (0 - 75)

Endo dismisses symptoms, declares I am euthyroid, says my thyroid function test records (annually 2000 --> 2009 ) show FT4 around 12. She says this is my normal. But I was only getting so many tests done since 2000 because had symptoms and knew something was up beyond the run-up to menopause.

Now, seven months on, weight refuses to budge despite supplements, despite exercise, despite "clean" gluten + wheat-free diet.

End of July and I am still an extraordinary 81 kilos - no change whatsoever - after a lifetime of swinging between 53 to 63 kilos. And I'm 5'3"! Nothing fits. Barely go out.

I am 56 and just went through menopause. This kind of weight gain - sapping confidence and enthusiasm for life - cannot be explained by menopause. Estrogen also tested and it is low so estrogen dominance not an issue.

And finally, results of 24-hour urine thyroid hormone transport test done in July by private, functional meds guy but dismissed as useless rubbish by endo:

T4 - 428 (range 347 - 1994)

T3 - 833 (range 592 - 1850)

On net, found this:

optimal level of T3 in urine is 1400-to-2600 pmol/24hours.

optimal level of T4 is 1925-to-3000 pmol/24hours.

Whew - my nutshell ended up being a veritable orchard. Huge thanks for reading and for any insights you can offer.

I need to get on something stronger than these broad spectrum supplements + powdered bovine glandular but what? Naturethroid? T3 only? I cannot wait for treatment and cannot afford to keep paying for private guy.

With hope,

Susanxx

[Clutter]

Susan, Your supplementing and dietary changes have significantly improved your thyroid function and reduced your autoimmune thyroid antbodies (Hashimoto's) since March. Your FT3 now is just about perfect. TSH is low in range because you have adequate T3, the active hormone required. FT4 is low in range but isn't inhibiting T3 conversion.

You have Hashimoto's disease but it hasn't yet caused you to beccome hypothyroid and I really advise against self medicating with any form of thyroid hormone replacement with your current thyroid levels. Hashi's can swing you from hypo to hyper and back and will probably make your thyroid under perform but it hasn't happened yet.

Could the fatty liver be responsible for your symptoms?

Ferritin is optimal at 70-90 so supplementing iron is a good idea. Take each dose with 500mg-1,000mg vitamin C to aid absorption and mitigate constipation.

[MaxiFrustrated in reply to Clutter]

Thanks so much Jackie. I am at a loss to explain what is going on. I seem to hang on to every calorie despite going bananas at the gym and eating like a monk. I have noticed cellulite forming on my upper arms!

Could the FT3 be available, sloshing around in my bod, but not actually getting taken up an into my cells?

I feel my fat-burning switch has been permanently shut off.

Even the endo was surprised that no weight has shifted, having read my daily food logs. And (silly TV show reference) I can truthfully say that No, I am Not A Secret Eater. I am loving plopping a poached egg on spinach or half an avocado for breakfast. And rice sticks every couple of weeks are a great substitute for pasta.

What else could explain the overall swelling and no downward movement on the scale? Even if you factor in that I am building muscle, which weighs more than fat, with all my bodypumping and the rest, some of this water should surely be bringing down the body bloat.

Shouldn't my FT4 be much higher?

Await your wisdom!

xx

[Clutter in reply to MaxiFrustrated]

Susan, T4 is an inactive prohormone, a storehouse, which is converted to T3, the active hormone, in the liver and other organs. Low FT4 can be a problem because it can make it difficult to convert sufficient T3 but that isn't a problem for you.

It is possible to have good FT3 serum and be functionally hypothyroid at a cellular level because the T3 isn't reaching the cells due to reverse T3 (rT3) or resistance to thyroid hormone. I don't understand these well and assumed it affected people on thyroid hormone replacement. I was advised rT3 tests are not available on the NHS but you can order them privately from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

[MaxiFrustrated in reply to Clutter]

Thanks again Jackie. Just hard to square all this with the fat accumulation, my disappeared eyebrows - outer third of both all but gone - and general swelling of face and body. Endo scoffed at my request for rT3, dismissed it alongside urine test as quackery. Wouldn't a trial of something stronger than Nutri Thyroid powdered bovine concentrate boost levels so that they could barge their way into my cells. Perhaps I dream too big!

[Clutter in reply to MaxiFrustrated]

Susan, Taking hormone you don't need may cause rT3 so it may be wise to check your rT3 first.

If you have rT3 or hormone resistance you may need supraphysiological doses of T3 to overcome them. It really needs supervision by an endo who understands them and close monitoring to avoid damaging your heart and bones.

[MaxiFrustrated in reply to Clutter]

My worry is that the Nutri Thyroid bovine glandular I am taking IS actually improving my thyroid function, but now masking the core problem.

I came across this from Mary Shomon, reporting on a paper presented in 2011 to the American Thyroid Association:

The researchers concluded that most of the OTC thyroid supplements that were studied contained clinically-significant amounts of T4 and T3, in some cases doses that exceed typical prescribed amounts being used for thyroid hormone replacement treatement.

The Nutri Advanced supplements I'm taking, developed by Martin Budd, are the first port of call for functional medicine practitioners in the UK and USA.

Here's the link to the full article:

thyroid.about.com/b/2012/02...

I simply cannot afford to keep shelling out for these expensive supplements for life. And what happens when all my vital vitamin and mineral levels are in optimal range? Do I keep popping these?

Has anyone had the same dilemma?

[Clutter in reply to MaxiFrustrated]

Susan,

Some info on rT3 and resistance to thyroid hormone (RTH) below and I have also linked to another member's thread discussing RTH. You can use the HU search function to look for other threads about rT3 and RTH.

RT3 occurs in anyone who has a source of T4 - tablet or their own thyroid. However, without measurement, we have no idea of the person's RT3 level.

RTH is usually regarded as a genetic condition.

Resistance to thyroid hormone (RTH), a syndrome of reduced responsiveness of target tissues to thyroid hormone (TH) was identified in 1967 (1). An early report proposed various mechanisms including defects in TH transport, metabolism and action (2). However, with the identification of TH receptor (TR) ß gene mutations 22 years later (3, 4), the term RTH become synonymous with defects of this gene (5). Subsequent discoveries of genetic defects that reduce the effectiveness of TH through altered cell membrane transport (6, 7) and metabolism (8) have broadened the definition of TH hyposensitivity to encompass all defects that can interfere with the biological activity of a chemically intact hormone secreted in normal or even excess amounts. In this revised chapter, we have retained the acronym RTH to denote the syndrome produced by reduced intracellular action of the active TH, T3. The term of reduced sensitivity to TH (RSTH) is used to denote reduced effectiveness of TH in the broader sense.

thyroidmanager.org/chap...

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

healthunlocked.com/thyroidu...

[MaxiFrustrated in reply to Clutter]

A thousand thank you's Jackie. I will read all. I think I have some sort of cellular resistance to thyroid hormone and hope some of this material can help me convince doctors.

I just wish my endo recognised rT3 as a useful test. And my GP, as accommodating as she's been with blood tests and referrals, closes ranks behind my endo as she is deemed the thyroid expert.

I suppose I can save the cost of another appt with the functional meds guy and order the test myself from Genova. I am just tired of spending £££'s I don't have trying to figure out what's going on. Since the endo does not recognise rT3 - "We don't do that Susan. Like the urine test, it's not evidence-based medicine" - I feel increasingly tied to the expensive functional meds doc as he would be the only one recognising the validity of the result.

At any rate, will tuck in to all this material as soon as I can Jackie. Thanks again for sharing all your knowledge.

Oh and have a look at this, which makes no end of sense to me:

nahypothyroidism.org/thyroi...

xx

[Clutter in reply to MaxiFrustrated]

Very interesting, Susan, thanks for posting it. Dr.BDP who I mentioned earlier will recognise the validity of a rT3 test and understands the concept of cellular hypothyroidism. He's written several books which members recommend.

amazon.co.uk/Your-Thyroid-H...

[MaxiFrustrated in reply to Clutter]

Just to note: the fatty liver and cholesterol spike have only come with the sudden, inexplicable weight gain. Have read up on it and don't see how all the hypo symptoms I've had since my Hashi's diagnosis could stem from that. More likely is that the additional weight has infiltrated organs too.

[Spareribs]

Hi Maxi - vit D really helped me - I hope it helps you. Vital minerals can't be ignored, your Endo dismissed low iron? really? (best take iron with vit C)

I found NutriT gave me a starting boost but was told you need actual hormone for it to work with.

so.... sorted feritin, folate B12 too before considering trying anything else - (and magnesium, K2, selenium etc.. very important to check calcium) still have an extra 5 stone now - but feel better, at least hope to get there.... - oh and biotin/ferritin suspects for hair loss... J

[MaxiFrustrated in reply to Spareribs]

Thanks Sparerib. Taking iron tabs with my morning warm lemon/ginger water and liquid Vita D too. Awaiting B12 details from endo's aide as she only declared my level "normal". Selenium + magnesium and all the other bases are covered with the Thyro Complex supplements.

Did you, like me, start down this path too? You say Nutri gave you a starting boost. Love to hear more.

[greygoose]

Hi Susie, sorry to hear of your frustration. I know how frustrating it can be!

Well, your T3 was very good in May according to the blood test. But in July, it's really low, according to your urine test. I would disagree with your edo, urine tests are the most accurate! But as they only tend to go by TSH anyway, not much point in stuffing your T3 results Under his nose!

Hashi's does mess around like that. But yet has so far managed not to get your TSH over the required level so these stupid doctors consider that no action is required. That is a moot point. There are some specialist that believe that treating before the TSH gets too high can prevent further damage from the antibodies. But it's a decision only you can make.

What I would say is that your exercising and 'eating like a monk' are probably making matters worse. This really isn't the time for low-calorie diets. You need calories for all sorts of bodily functions, including converting T4 to T3 (that is assuming that you have enough T4 to convert!). When calories are in short supply, conversion is the last in line for a hand-out. If you don't convert, you get more hypo, and therefore put on more weight. Besides, the weight probably isn't fat, it's more than likely water, so dieting isn't going to do anything for that.

And then exercising also uses up your calories - I know that you think that's the reason for doing it! But when you're hypo, forget calories in vs calories out, it no-longer works that way. Your exercising is using up your calories that are in short supply to begin with, and needed for conversion. Therefore you get more hypo and put on more weight...

Not only that, but exercising also uses up the T3 that you have been struggling to make and that you need for your metabolism - among other things - so you get more hypo etc etc etc. It may look good on a test but that's only what's in your blood, not what is in your cells, and if you are going to use up what you have in your blood by exercising... you see where I'm going here. Besides, exercising is not going to make you lose weight! Not when you're hypo.

So, my advice to you would be to eat more and exercise less - just gentle walking or something like that. No low-calorie diets, no salt-free diets - your adrenals need salt and vit C - and no low-fat diets. Eating fat doesn't make you fat. In fact, research has proved that those who eat the most fat lose the most weight. Forget about cholesterol, it's a red Herring thrown in our faces by Big Pharma. We need fat to make cholesterol to make hormones!

But I'll shut up now - I could go on for ages! lol Hope you find a solution soon.

Hugs, Grey

[MaxiFrustrated in reply to greygoose]

Thanks for weighing (ha!) in Grey. I understand your point about exercising and have read about this on the forum but I really do feel I need it for the brain boost (endorphins) I get from it and the muscle maintenance/building benefit that counters the effects of menopause. I'm not doing crazy cardio like I did in the Jane Fonda high-impact days of my youth, but mixing it up with water aerobics, bodypump (muscle-making weight lifting), Pilates, yoga and short, sharp intervals on the treadmill.

By eating like a monk I didn't mean to suggest I was eating like a mouse. I've taken on board the Hashi's advice and cut out gluten, wheat, sugar (aside from fruit and "good" carbs like sweet potato) and it agrees with me. I am not depriving myself of calories at all, just making sure that nearly all of what I am eating is giving me the micronutrients I need. It hasn't been a huge change for me as I've been a bit of a health nut my entire life, adhering to the 80s and 90s Mediterranean regime of low-fat, high-carb, plenty of whole wheat grains. But for years now I have been eating good fats - modest olive oil, more liberal coconut oil.

The glandular powder, all the micronutrients in the Thyro Complex, and going gluten-free have given me back my energy. Between January and mid-March, I was in bed 16 hours a day, as if hit by a convoy of juggernauts. And my feet were like ice blocks, while others in the flat sweltered with the heat turned up so high.

I defer to the wisdom of you and Clutter and all the other kind, suffering souls on this forum. Just need to figure out how to move from Nutri Thyroid glandular to something long-term. What do you think of the Mary Shomon article about most over-the-counter supplements containing more T4 and T3 than replacement hormones? Sadly, no brand names are mentioned but Nutri Advanced is right up there with the most popular prescribed by functional medicine practitioners.

[greygoose in reply to MaxiFrustrated]

Well, I still think you are doing more exercise than your present position allows. But only you can decide.

I haven't read the Mary Shomon article yet, but I have no opinion on OTC suppléments because I've never tried them. I did try Nutri-thyroid that I bought on line, but that just gave me stomach ache. However a lot of people here seem to like Thyroid Gold. I think you can only buy that on-line but you don't have to have a prescription.

We obviously have different opinions on how monks eat! lol

[MaxiFrustrated in reply to greygoose]

Yeah, lol, was thinking more about the purity of the way Benedictine monks eat rather than calorie restriction. I've been boosting protein and am in line with the latest science on good fats - olive oil, virgin coconut oil + even some butter - aiding proper metabolism of fat and all calories.

My problem is my fat metabolising switch seems to have been turned off somehow.

If it's not thyroid, or thyroid hormone resistance, is it lymph or connective tissue or... what? Searching because my endo, lovely as she is, is among the ranks who just go by bloods. I think her main specialty is diabetes, with thyroid dysfunction as a side. It would be great to find someone who delves into the more complex thyroid problems, someone willing to do some digging away from the thyroid blood panel.

As we've all discovered, mainstream endos n GPs are not keen to embrace articles that aren't BMA-approved. I've brought in selected research to my endo appointments and the letters back to the GP suggest they've been discarded the second I'm out the door.

From what I've read, Thyroid Gold seems much the same as Nutri Thyroid, perhaps a bit stronger. I would love to hear from someone who has gone down the supplements route and then made the switch to bonafide hormone. I certainly don't want to take anything I don't need (thanks Clutter), but I fear popping these bovine glandular supplements for six months may be obscuring the true picture.

[Clutter in reply to MaxiFrustrated]

Susan, email [e-mail] for the contact details of Dr. BDP. He is a private doctor but doesn't prescribe as he resigned his GMC registration but he will recommend treatment which your GP/endo may agree to or you can self medicate.

[MaxiFrustrated in reply to Clutter]

It would be wonderful to get another medical perspective on this. Thanks so much Jackie.

[fixit]

Hi Maxifrustrated, I have just read your post with great interest as I too am seeing a Functional Practitioner for help with many hypo symptoms and no help under the NHS with a TSH of 3.5, FT4 11 and FT3 4. Similar to you, I have been told that my low FT4 must be normal for me as otherwise my TSH would rise (NHS thinking!).

I have been prescribed Nutri Thyro Complex and Nutri AdrenoMax. After 3 weeks on these I haven't noticed any improvement at all, apart from worsening of IBS and diarrhea! I was interested to note the improvement in your blood thyroid levels on the Nutri Thyroid glandular. Can I ask how many of these and how many Nutri Thyro Complex you take? I think this may be my next step to add in the glandular. I am due to have the urine thyroid test in September to look at my levels after taking the support supplements before possibly starting NDT, but I am wondering if the Nutri Thyroid may be worth a try first to see how it may improve my levels.

I am sorry I can't really offer you any further advice, other than to share my similar story so far. Good luck in getting sorted. It is a very expensive and tiresome journey when the NHS wont help.

[MaxiFrustrated in reply to fixit]

We do indeed sound similar when it comes to bloods. Great to hear from you.

Thyro Complex is very hard on the digestive tract. I too found it took a bit of time for my system to get used to them. Doc said to persevere when I asked about it after first week of aggro.

I take two first thing in the morning and make sure I have nothing to eat for half an hour.

Perhaps my energy boost also came from cutting gluten. I did that before I went whole hog and quit wheat and sugar too.

March through June, was on one T-convert and two Nutri-Thyroid with breakfast and then same again with lunch. In July, when there was no weight loss dividend from all my clean eating efforts + exercise, he told me to boost to three Nutri-Thyroid twice a day - six in all. That's the max dose.

Are you seeing someone in London or..? PM me with who if so. And best of luck with it all.

Maxi