Is this it?? : Hi everyone I'm sorry but I feel... - Thyroid UK

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Is this it??

Pebs130
Pebs130

Hi everyone

I'm sorry but I feel this post is going to be more of a rant than anything else because I'm sick to the back teeth of having this debilitating condition. I was diagnosed in June 2017 due to extreme fatigue and weight gain. At the time I also felt fed up because the weight gain was getting me down. I'm now nearly a year down the line and whilst my energy levels may have risen slightly, I'm more so overweight, I have dire pain in my legs with one leg having pitting odemea and I now feel depressed to say the least. I have been told my blood test came back fine and GP says I'm on the right dose of 75mgs. I have recently finished an intense 7week course of VitD and had my minerals and vitamins tested approx 6 months ago hence the course of Vitamin D. I am 44 years old and I feel at least 15years older and due to pains in my legs I have the mobility to match. I've stopped accepting invites to events or to meet friends because Im in pain or have nothing to wear that I feel good in. I have a telephone appointment with my GP on Friday and to be honest I don't know what else she will say she can do. After reading as much literature as I can including on this site, I am convinced I'm not converting T4 to T3 but what can I do if T3 has been banned in UK. Please can anyone point me in the right direction. I'm now so fed up with myself, I don't know where to turn.

39 Replies
oldestnewest

T3 hasn't been banned in the UK. It's just that doctors don't want to prescribe it due to the cost.

But, the first thing you should do is get copies of your labs to see if you convert or not. You can't just assume you don't. :)

SeasideSusie
SeasideSusieAdministrator

Pebs130

Before we can comment or make any suggestions we really need to see your test results, with their reference ranges, for the following

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

If your GP won't or can't do them all you can do them with a home fingerprick test (or venous blood draw) from one of our recommended labs.

As for your Vit D - what was your level before your 7 week course, what dose of D3 were you given, what is your new level (hopefully it has been tested) and what maintenance dose have you been given or recommended to take?

Pebs130
Pebs130 in reply to SeasideSusie

Hi SeasideSusie

I rang the GP first thing and have just picked up my blood results from 13th April 2018. I was shocked, disappointed and angry at what I saw. I don't understand what is in range and what isn't because GP has never explained it but given what I've read on this site, I am livid that my GP bases my optimum health on testing only TSH and T4 levels. The results are as follows

Free T4 level 17.8

TSH level 0.02

Anymore thoughts?

SeasideSusie
SeasideSusieAdministrator in reply to Pebs130

Pebs

Have you got the reference ranges for the results? They vary from lab to lab so we need the ranges that come with your results. Should be something like

TSH: 0.02 (0.2-4.2)

FT4: 17.8 (12-22)

I have of course just guessed those ranges.

Your TSH will be below range but your FT4 could be midway through range or top of range based on those we see here.

By the way, just testing TSH and FT4 is normal, some health authorities only test TSH as standard.

Pebs130
Pebs130 in reply to SeasideSusie

Sorry first time I've studied my results.

T4 (11.0-22.6)

TSH (0.20-4.00)

SeasideSusie
SeasideSusieAdministrator in reply to Pebs130

So your FT4 is 58% through it's range. The aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 at the upper part of their ranges if that is where you feel well. Upper part of range means approx the top quarter.

It would be interesting to see your FT3 result as well but your GP probably can't get that done as it's the lab who decides if it's carried out. FT3 needs to be done at the same time as FT4.

There is room for an increase in your dose but your GP is probably only going by your low TSH and may not be willing to increase. You could use the following information to request an increase from thyroiduk.org.uk/tuk/about_... > Treatment Options

"Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

Dr Toft is past president of The British Thyroid Association and leading endocrinologist.

To get a full picture you really need all those tests I listed in my first reply and to do that with a private test you can do

Medichecks medichecks.com/thyroid-func...

Or

Blue Horizon bluehorizonmedicals.co.uk/t...

Hi Pebs, if you were on the right dose you would not be in such agony. Your dose is barely enough to sustain you. 125 mcgs. is more of an average. I would try an increase first. Your age makes me wonder if you should be using some progesterone cream as well. You really need to pinpoint some of these assumptions your doctor is making. Here are the recommendation from STTM. stopthethyroidmadness.com/l...

It's hard to say. Maybe 75 mcg is right, she's not converting, so she just needs some T3? A larger person who is very hypo, depending on their bloods, would probably need a higher dose over someone who is small and not as hypo. Personally, I'd probably die on 125 mcg T4. I've been a pretty fit 9.2 stone the whole time, but initially had other hypo symptoms. I was on 75 mcg + 10 or 15 mcg T3 for a long time, FT3 optimal, FT4 not quite, few hypo symptoms. Now on 88 + 15 going on a year. Both optimal, no hypo symptoms. It really just all depends. Need to see bloods to know.

:-)

Hi ShootingStars, the thing is it will be easier for her to get T4 with the current conditions. If you can tell her how to obtain T3 or even NDT that might be perfect.

Hi Heloise. Her blood results are need to access if she needs T3 or not, and also if her current dose of T4 is doing is good for her. T4 by itself is not the right medication for many people, regardless of how easy it is to get it. We'll know more after we see her results.

Yes, that's why I posted the link below.

Pebs130
Pebs130 in reply to Heloise

Hi Heloise

What is progesterone cream and what will it help with.

Heloise
Heloise in reply to Pebs130

Pebs, I am assuming you are a female. One of the reasons is that you may be hypothyroid is that you have too much estrogen and not enough progesterone.

I am curious if you have followed up on the advice you received several months ago. Were you able to get tests that were suggested back then that may attribute to why you are not feeling better? There is probably a sequence to follow. I think greygoose mentioned all that. One of the antibodies (TPO) has something to do with too much estrogen and a reason for one of the problems. So progesterone may help with that balance.

Do you know how to go back and read those replies? I would follow up on that.

youtube.com/watch?v=3_uaUXi...

Pebs130
Pebs130 in reply to Heloise

I had my vitamin and minerals tested as suggested. My D3 was low but everything else was fine. I was given 7weeks of vitamin D and I did see a bit of a lift in my mood and energy but that has since subsided since finished course in February this year.

Thank you for explanation regarding progesterone. I have had an hysterectomy and so went into early menopause. I haven't taken any HRT since being diagnosed with hypothyroidism due to this increasing any estrogen left in my body. I wouldn't think my estrogen would be that high

Pebs

Heloise
Heloise in reply to Pebs130

There is another antibody that may contribute to your problems but when they say your levels are ok they may not be as high as we need them so that may be false. Especially iron if low can cause hair loss and restless leg syndrome. You have to look at all four tests.

SERUM IRON (also called just Iron or Total iron): In US ranges, women with adequate iron are ‘close to’ 110 (or 109, or 108, or 107, etc….); men who have plenty of iron are “close to” the upper 130’s, based on what we’ve seen on hundreds of lab results. In other ranges such as European or Australian, optimal appears to be the lower-to-mid 20s at the least for women and higher for men.

If you are considerably higher than optimal, you could have the MTHFR mutation which will need testing and treatment. The MTHFR mutation also drives the ferritin low with normal or high iron is many of us, we’ve noted. If all three iron labs are high (serum iron, % saturation, and ferritin, you may have the genetic hemochromatosis and you can ask your doctor for testing for that.

PERCENT % SATURATION of IRON: When iron is good, women tend to be “close to” 35%, or 34, or 33 (or .35, .34, .33 for Canadian ranges), we have discovered, and men go from 38% to 40-45%.

Notes: Measures your serum iron divided by your TIBC. Like all iron labs, you should be off all iron for at least 12 hours before testing to see how your supplementation is doing, or up to 5 days to see what your natural levels are. The latter may be best. NOTE: % Saturation can look falsely good or high if your TIBC is too low!!

TIBC (Total iron binding capacity): When iron is optimal as explained above, TIBC will tend to be in the low 300’s (with a range of 250 – 450) or for other ranges, a little more than 1/4th above the bottom number in the range provided. p.s. Some have a TIBC in the 200’s consistently and no matter what–Janie Bowthorpe is like that and so are others.

Notes: TIBC measures whether a protein called transferrin, produced by the liver, is enough to carry iron in the blood. Used to determine anemia or low body iron. If your result is high in the range and in the absence of chronic disease, you may be anemic. NOTE we do NOT treat the TIBC. We treat the iron and % Sat. The TIBC just gives us interesting information as explained.

FERRITIN: Optimally, females often are around 70-90 with ferritin (Janie’s is 80 or less when her iron is good)….though getting up to the 50’s has been good, too, when iron and % sat are OPTIMAL. Men tend to be slightly above 100, such as 110 – 120.

Notes: Measures your levels of storage iron. NOTE THAT WE DO NOT TREAT the FERRITIN LEVEL. A mistake. We treat iron and % saturation and let ferritin follow in its own accord. But ferritin is interesting to watch, and can also point to INFLAMMATION if it goes high without serum iron being high.

If your ferritin is low along with inadequate/lower levels of iron and % saturation, that usually points to simply low iron, which is common with those on T4-only meds, or undiagnosed, or under-treated. But we do NOT treat that low ferritin. We treat the inadequate iron and % saturation, and over time, the ferritin moves up by itself if it’s too low.

If your ferritin is low with very good or high iron, plus a TIBC in the middle 300’s or higher, that usually points to having high heavy metals and an active MTHFR mutation.

If your ferritin is much higher along with less than optimal iron, it can point to INFLAMMATION, i.e. inflammation causes iron to be thrust into storage, and inflammation is common with certain thyroid patients for a variety of reasons. In less common cases, higher ferritin can be from liver disease, alcoholism, diabetes, asthma, or some types of cancer. But for most of us, it’s just about inflammation from hypothyroidism, or gluten issues, or unknown. So we need to lower the inflammation before taking iron supplements.

If ferritin is high along with a high % Sat and Serum iron, you may have hemochromatosis, an inherited condition. Time to get tested in working with your doctor.

By the way, we learned that we should be off all iron supplementation for at least 12 hours before testing to see what supplementation is doing for us, but 5 days to see your true iron levels.

FEMALE HORMONES (serum is recommended over saliva)

Progesterone… cycling women

20-22 ng/mL (US) serum

64-70 nmol/L(UK) serum

250-300 pg/mL (US) saliva

1100-1300 pmol/L (UK) saliva

Progesterone… noncycling women

8-10 ng/mL (US) serum

25-32 nmol/L (UK) serum

100-125 pg/mL (US) saliva

440-585 pmol/L (UK) saliva

httpsttm://youtube.com/watch?v=Z5SaM0R...

Or you may be one of these people. stopthethyroidmadness.com/t...

Hi Pebs130, I was told my thyroid levels were fine for years and just took the doctor at his word. However, as many people on here will tell you, you need to ask for your test results to be printed out and collect a copy from your surgery and then post them on here. I have learned so much from this. Does your doctor just test TSH? Does he/she include free T4 and free T3? All those figures are needed to be able to assess if you are on the right dose. GPs often don't understand thyroid disease, so it's likely the dose you are on is not right. But the first step is getting those results printed out. The second is posting them on here, and the third might be getting a private finger prick test done (details of providers on the Thyroid UK website) - not costly - and make sure you have the free T4 and free T3 levels included. I hope you will soon be on a journey to feeling better.

SlowDragon
SlowDragonAdministrator

First thing is, do you have any actual blood test results? if not will need to get hold of copies

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 2018)

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also essential to retest vitamin D, and also test folate, ferritin and B12. Add results and ranges if you have them

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

Also ALWAYS stick to same brand of Levothyroxine. Different brands give different levels/results

You don't always need T3 added if not converting well. I reversed mine through getting my vitamins etc optimal though it can take time depending on how low things are. Plus if you aren't as fortunate as I was you can probably lessen the amount of T3 needed so might be easier to get a smaller top up or cheaper if getting it yourself.

I have been where you are and the swollen legs and pain is soul destroying. My experience was my Dr just wasn't interested and didn't believe my food diary! And yet he was amazed I'm not diabetic. I gained 6 stone in 2 years after thyroid removed and even tho they had forgotten to give me levo they kept saying thyroid tested fine!!!!! I didn't have one. My best piece of advise is stop relying on your Dr to get well, they have no idea. T3 is not a magic cure and throws up its own set of problems if your adrenal function not good.

The only thing I can say is (don't laugh) I started taking tumeric, pepper, ginger, collagen, coconut oil and cinnamon in a morning coffee and the pain in my joints mostly gone. A friend suggested it lol I thought she was bonkers, I now take it in a capsule. I lost weight doing low carb 3 stone so far, I am so unfit compared to my previous sporty self so exercise exhausts me. I take vits D&B12 pro&pre biotics for gut health as my digestive system had given up. I wear compression stockings to help the swelling insist your Dr gets them on prescription for you as you need proper ones that are made to measure.

Like you I expected my Dr to get me well and know his job! Don't waste a minute more on that thought, it nearly killed me. Get Reading, research, get in tune with your body to work out what you need to get well. It is trial and error so keep a detailed diary of food, exercise, medication, supplements and look for patterns of improvement. This is not a quick fix so don't get disheartened it can be done but only by you, your Dr has no idea. The first day I walked to kitchen without hobbling in pain, I cried I had been in excruciating pain for so long (writing this this makes me cry lol) it was a bloomin miracle for me.

I notice on the news this morning that Dr's and nhs say they are unable to deal with chronic illness and multiple illness which we have as under treated thyroid has a domino effect. You can get better you just have to find what works. Xx I think your dose too low but you need full batch of tests to know and insist you Dr does them x

suzie2004
suzie2004 in reply to endomad

What capsule do you take? The pain in my legs is so bad I could cry

endomad
endomad in reply to suzie2004

Nu u nutrition organic tumeric & black pepper about £20 a years supply. I used powder first as listed above for 2 months as I was sceptical but it has made massive difference for me. I never recommend supplements as I'm not a big be liver in them. Try powder 1st go to asda bag of tumeric and pot of ground black pepper, bag of ground ginger about £2 see if it helps before buying years woth of capsules xx

endomad
endomad in reply to endomad

I often cried from my leg pain and my feet burned like I was standing on hot irons. Can't remember but vit b5 I think helped the feet for a while. They hurt sitting, lying down, standing, it kept me awake at night xx

Look up golden paste: it's a more natural way to get all the nutrients in turmeric (not just curcumin) and is a very cheap method. You need turmeric from supermarket or online grocer, black peppercorns, oil (coconut or olive), a saucepan, a teaspoon (or set of measures) and a grinder (electric or manual). Works for animals too.

yes if you look at my previous post it lists the ingredients and i use to have it in my morning coffee, however the capsules are far better and more active ingredient than a tspn of powder and it stops all the yellow staining everything including my gums and tongue, also yellow paste makes your breath smell like a dragon lady. I also use collagen powder for my joints as i got fed up making bone broth.

It needs to be cooked for bioavailability and MUST have fat with it (no need for ginger unless you like it), better to grind pepper freshly not use pre-ground. Most capsules are just curcumin, not turmeric - ceylon cinnamon stops the cat pee smell (must be ceylon/true). The staining should go from mouth etc almost immediately if correctly prepared (fades in the sun anyway if on material or work tops - it's just curry paste) You can get Tu-go bars (very nice), but currently have to be imported from Australia.

The capsules are far less faff and every bit as effective. Each to their own x

Ground turmeric averages only 3.19% curcumin, which is nothing. You'd have to consume 2 ounces every day just to get to 50 mg, which not a studied therapeutic dose. Minimal evidence of positive therapeutic response occurred with as little as 80 mg curcumin (NOT tumeric), but as high as 3,600 mg. Capsules contain highly concentrated amounts of curcumin, usually 95%. Each capsule is 500 mg.

Who would ever want to take 2 or more ounces of ground turmeric per day? First, no therapeutic value (according to studies), then you'd have nasty stained yellow teeth, and you'd probably have the sh*ts, too. By the time you'd buy enough ground turmeric and black pepper to get an actual therapeutic dose, you could have bought a couple of bottles of 95% curcumin capsules.

ncbi.nlm.nih.gov/pubmed/170...

examine.com/supplements/cur...

People really need to do the math and research so they know what they are putting into their bodies. Also need to be aware that curcumin can reduce iron absorption, there are drug interactions, plus piperine increases the activitiy of some drugs.

shooting stars, yes i read somewhere you would have to eat 16+ curries a day to get enough tumeric. I didnt know about the iron absorption, i will keep an eye on that, my endo tests everything twice a year so last ones still ok but i am prone to low iron, i use spirulina and fresh stinging nettles in juices as i cant stomach huge amounts of meat.

Whereabouts do you live?

My honest answer is - find a good Nutritionist or Naturopath. Your Dr will not have a clue that your whole body works together and that root cause has to be established.

I has similar issues with near top of the range tsh. Try suggesting that if anywhere in range is ‘fine’ then there is absolutely no reason she cannot give you enough raises for you to try being ‘ fine’ nearer to the bottom! My GPhad no arguement she could make so I got my own way. I went from 50 a day to 150 over the next few months, made damn sure I had at least one improvement to report each time and got right to the bottom and felt much better. I also kept a spread sheet of symptoms with improvements or not shown for each dose. This seemed to help her grasp it better

I love how on top of things you are! Being so organized with a spread sheet containing your symptoms clearly paid off. Doctors only hear a fraction of what patients say, plus they don't keep track of or can't spontaneously recall what symptoms a patient had while their bloods were at certain levels. People have to be their own advocates if they want to get anywhere!

I super organized when I go to the doctor, too. I have my history of FT3, FT4, TSH, and TPO printed out, including where I had illnesses that effected them all. I also include any flagged high or low blood results. Then I make a list of my questions and concerns, so that I make sure I make the most of each appointment in order to achieve the results that I need. I doctor doesn't like that, then they are not the doctor for me and I never see them again. Not worth my time, money or my health!

I didnt start out that organised to be fair due to brain fog, it took 4 appts to remember to ask a question once 😱 I saw 4 docs before i found one I could work with and was at least willing to listen to a counter arguement!

endomad
endomad in reply to Phoenix605

I keep a daily journal but it means reading back over stuff to find triggers etc. I like the idea of a spreadsheet would you be willing to private mssg me a picture of yours so I can get an idea of how you set it out and what goes where. X

Phoenix605
Phoenix605 in reply to endomad

Happy to share, just figuring out how!

endomad
endomad in reply to Phoenix605

Thank you for sending me a copy it's a clever way of easily seeing what's going on. I appreciate it x

I've started reading Izabella Wentz's book, Hashimoto's Protocol for more holistic ideas. It's early days so can't tell if going gluten, dairy and soy free has helped but it has got some sensible ideas.

Good luck.

Thank you everyone who has replied to my post. I rang the GP first thing and have just picked up my blood results from 13th April 2018. I was shocked, disappointed and angry at what I saw. I don't understand what is in range and what isn't because GP has never explained it but given what I've read on this site, I am livid that my GP bases my optimum health on testing only TSH and T4 levels. The results are as follows

Free T4 level 17.8

TSH level 0.02

Anymore thoughts people?

endomad
endomad in reply to Pebs130

Having tested within range without a thyroid I'm not a great believer in the tests it should be about how you feel and this is how Dr's get to cop out if treating you as they say there, those numbers say your fine, when in fact your on your knees. This is why most go the self help route it must be about whether you feel well and you don't. However it could be low vits iron etc or it could be you are on a very low dose xx

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