Hashimotos....Houston we have a problem! Please help me.

[SantaMonica2002]

I honestly don't know if I'm coming or going. Three Dr's later, and I'm still in the same sinking boat. How many times can you say no to a Doctor - just sitting there shaking your head and you feel like the darn world in on your shoulders when I'm sleeping for nearly 15 hours a day. My youngest Son wonders where I am, and his Father has to tell him that Mother is in bed. He's only 14, and a lovely boy, but his school work is suffering, as where am I?...in bed. My Husband is doing his best to cope. Oh my word. Push yourself, push harder. Heavens I'm upset sorry. I don't know if I'm making any sense, but I'm sure some of you have been there too. I need your advice please.

These are my latest results, the comments alongside are from the Doctors, all three of them.

TSH *0,13 (0.27 - 4.20) You need to drop your Levo from 100mg, to 75.

FT4 16,8 (12 - 22) Good.

FT3 3,9 (3.1 - 6.8) Excellent your within range.

B12 326 (145 - 569) I'm already taking sublingual B12.

Folate * 5,89 (8.83 - 60.8) Using Thorne already.

Ferritin *189 ug/l (15 - 150) All three said fine.

Vit D 49 (75 - 150) No problem, it's Winter!

What am I doing wrong, what have I missed? I don't know what to do. I can see my FT3 is too low, why can't they see that. My TSH is supposed to be suppressed isn't it, as I'm taking T4 anyway? Oh before I forget, I showed one Doctor my hairline and said 'look, it's going again, and I still don't have hair elsewhere on me'. Do you know what he said? 'look at my hairline, I'm going bald too'. Wow. Now that's going some, I was devastated.

Please help me.

[Clutter]

SantaMonica2002,

You are NOT over medicated just because TSH is low. FT4 and FT3 are less than halfway through range and reducing dose to 75mcg will see both drop lower. As you are so symptomatic a dose increase to 125mcg would probably be helpful. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

How much folic acid or methylfolate is in the Thorne? In the UK you would be prescribed 5mg folic acid to correct folate deficiency.

How much B12 are you supplementing?

Vit D is optimal around 100nmol/L. You can buy D3 without prescription. I recommend softgel capsules as the oil will aid absorption. I suggest 5,000iu daily 6-8 weeks and then reduce to 5,000iu alternate days and retest in May.

[SantaMonica2002 in reply to Clutter]

Clutter, thank you for replying. I forgot to add in my post that one Doctor said that I shouldn't need to supplement if I was on a good diet. Yes quite!!! He then proceeded to tell me that B/P was high, I was sat there tamping mad at him. Anyway moving on, the thorne has 200mcg and then it says %50dv. The B12 is 5000MCG Methy (can't see the rest of the word).

I also forgot to add that I am already totally Gluten free, ouch. Don't even think about weight gain, I only have to look at food at the kg come on. 'No problem', they said, your too thin anyway. Give me strength. This is the French Doctor's for you, I can see your link that you have kindly sent me, are they going to read it? is the big question too.

[SeasideSusie Remembering in reply to SantaMonica2002]

SantaMonica2002 Are you using Thorne Stress B, as that has 200mcg methylfolate? Thorne Basic B has 400mcg methylfolate. But as Clutter says with a folate deficiency you really should be having folic acid prescribed.

[SantaMonica2002 in reply to SeasideSusie]

Thank you for your reply. Yes, that's the one I'm taking.

[SeasideSusie Remembering in reply to SantaMonica2002]

I would do as Clutter suggests and pop over to the Pernicious Anaemia Society forum here on Health Unlocked with your Folate and B12 results for further advice.

The Stress B is fine as a B Complex but doesn't contain enough methylfolate to raise your dire level, the Basic B doesn't either, you need much more, but let the PA forum advise you.

[Clutter in reply to SantaMonica2002]

SantaMonica2002,

A UK GP would prescribe 5mg folic acid for 2-3 months to get folate up. Deficient folate will prevent B12 working. I believe folic acid or methylfolate up to 800mcg is available without prescription on Amazon. You could take 6 x 800mcg tablets. You might want to ask for advice on B12 and folate on healthunlocked.com/pasoc

Many doctors are of the opinion that diet trumps supplements and it does, of course, assuming you are absorbing the nutrients. If not, supplementation is required.

I've no idea whether your French doctor will take notice of a British endocrinologists advice to UK doctors if your doctor is even able to read English. A lot of UK doctors take no notice of it.

[SantaMonica2002 in reply to Clutter]

Thank you Clutter, I'm going to get onto Amazon now and see what I can find. Phew, this is tough going. Should I up my Levo to 125? plus take the extra folic? I'm worried as you can see. This is just mind blowing. Look at the TSH, disregard anything else, why don't they LISTEN to us. This cannot continue for much longer, I'll be back in the UK to get some progress the rate I'm going.

[Clutter in reply to SantaMonica2002]

SantaMonica2002,

If you can't get your GP to prescribe folic acid you should buy it yourself. The 200mcg in Thorne is inadequate to correct folate deficiency.

Will you have sufficient Levothyroxine to raise to 125mcg when your doctor has reduced dose to 75mcg?

[SantaMonica2002 in reply to Clutter]

Yes Clutter I will. As the three Doctors gave me a script for Levo, so I'll have plenty of stock for the time being anyway. I would say for the next three weeks max. Then I'm up the creek.

[Clutter in reply to SantaMonica2002]

SantaMonica2002,

There's no point in that. It takes 7-10 days to absorb Levothyroxine and you'll be running out as it starts working (assuming it does). You need to find a doctor to prescribe a higher dose (difficult when TSH is already low) or buy Levothyroxine online to top up your prescription.

[SantaMonica2002 in reply to Clutter]

Where can I purchase that? and as you pointed out IF it works. Why do they look at just your TSH? why don't they ever take heed of the patient.

[Clutter in reply to SantaMonica2002]

SantaMonica2002,

Poor training. TSH should be considered in the round with FT4 and FT3.

[SantaMonica2002 in reply to Clutter]

Poor training? I wish the darn test didn't even exist if that's all they are going to look at. I'm also trying to say thank you, but my page won't let me (it keeps jumping up and down, and that is Win 10 I think and not me.) Thank you Clutter, very much so.

[Clutter in reply to SantaMonica2002]

SantaMonica2002,

HU are aware of the problems members are experiencing with PMs and trying to develop a fix.

[SantaMonica2002 in reply to Clutter]

Thank you Clutter

[helvella Administrator in reply to SantaMonica2002]

I am using Windows 10 - and do not have that issue. And Firefox (latest update).

Maybe try using a different browser? Edge, IE, Firefox?

But it really isn't your fault - it is an HU issue.

[SlowDragon Ambassador]

I see from your profile that you also have MS. There is lots of research into vitamin D and MS too

mssociety.org.uk/ms-researc...

[SantaMonica2002 in reply to SlowDragon]

Thank you for your reply. Yes I know, hence the reason I think that I have disregarded many of my symptoms over the years, due to the fact that I have MS. Being tired, lack of periods, weight gain due to immobility, RLS, I tell you, these two auto immune diseases could stand near enough side by side. Good eh?...not.

[humanbean in reply to SantaMonica2002]

If you got your vitamin D levels up to optimal and kept it there, which with your reference range would be about 100 - 130 all year round, not just in summer, there is a possibility you could prevent the MS from progressing, or could slow down the progression.

The fact that your doctor would think a result under the range for someone with MS is okay just because its winter is shocking.

[SantaMonica2002 in reply to humanbean]

Thank you for your reply. How many tears can I cry? Yes, your right it is shocking, how can they treat me this way? they are. One Doctor did the finger test with me (that normally my Neuro does), and he said 'oh yes, you do indeed have MS, I can see you have double vision'....words failed me on that point.

[UrsaP in reply to SantaMonica2002]

Appalling treatment! A disgrace to medicine. Do you take anyone to the Dr with you? You may want to consider, see if they treat you the same way when there is someone with you? Even better if that someone is able to strongly 'stand up' for you and confirm your symptoms, and that there is something that needs dealing with. (They may have more strength to do so when you are feeling so ill and down) I have found this works to some extent, they are less likely to be so rude, I would hope, if there is a witness, should you be likely to lodge a complaint.

[greygoose in reply to SantaMonica2002]

RLS could be due to low magnesium. Have you tried taking that? Most people are deficient, anyway.

Doctors know nothing about hormones or nutrients. As long as something is 'in range', they don't care where. So, just ignore them, and do your own thing. They'll never make you well, they're too ignorant. But, you, yourself, you have a fighting chance. Go for it!

[SantaMonica2002 in reply to greygoose]

Grey. Thank you for your reply. Now I'm bawling. I want my life back Grey, they won't give it to me. I can cope with MS, I can deal with people laughing at the way I walk, which happened to me yesterday, I can cope with not being able to drive because of my dipolia, I CANNOT cope with this total and utter ignorance by bloody minded Doctors who look at your TSH, and say your fine.

[greygoose in reply to SantaMonica2002]

I know, I understand. It's... awful. I can't think of a word bad enough. But, I think it's always been that way. Doctors tend to think of themselves as an elite, privileged band, far superior to their whiney, ignorant patients, so they just don't care anymore. We're making a fuss about nothing. We should just get on with it and leave them alone!

Well, that's exactly what a lot of us do. We self-treat so that we don't have to bother them anymore - well, no, not for that. We self-treat because most of the time, we can make a better job of it than them. I don't know anything about MS, I admit, but I don't suppose you can self-treat for that (can you?). But, you can buy your own levo, or T3, or NDT, and give yourself the increase you so badly need. And to hell with them!

[SantaMonica2002 in reply to greygoose]

I'm going down that route Grey, I can tell you. Enough is enough. Self treating MS? That's relatively easy compared to this, you jab yourself everyday with a needle, and hope for the best, no stress, keep calm, plaster a smile on your face, and your done. The combination of the two, different ball game though, as this is where becomes hard. OK, as you can see I have replied to Clutter about where I can my hands on Levo or T3 without a script it's the way forward for me and that's it. My FT3 & FT4 are too low, I just want my life back, in some shape or form, so I can be a proper Mother and Wife. Big sigh.

[greygoose in reply to SantaMonica2002]

Well, I'm sure you'll get lots of replies as to where to get what you need. I'm sure getting your levels up is going to make a huge difference to you.

[SantaMonica2002 in reply to greygoose]

I hope so Grey, I really do hope someone will help me. Wow. What a day, what a week, what a life

[UrsaP in reply to greygoose]

It is just soooo wrong that we are all having to do this self medicating. I despair reading these posts...I'm bawling along with SantaMonica, What is wrong with these people. Why do they become Dr's these days, obviously not a 'vocation' and not to help people! Is it just for the 'prestige and superiority', because if so their attitudes to their patients will kill that off one day, probably along with their patients. Why will they not consider, for one minute, that the patient might just be right. Why do we not have some real way of standing up to them and for ourselves, to be heard and taken seriously. Especially when we are all presenting all our lives with symptoms of the same thing. And the way Dr are now talking to us. How dare they...how come they can be so downright rude and get away with it! I think I am going to start taking another with me to appointments, I wonder how many would be so rude if there was a witness there? It is disgraceful and shameful. I feel for SantaMonica. To be struggling with Thyroid symptoms on top of other medical conditions is horrendous. This forum is amazing. It is wonderful for us all to have somewhere to turn, and to talk to such knowledgable and understanding people. I thank you all.

[SantaMonica2002 in reply to UrsaP]

Without the help of this forum, I would be in serious trouble I can tell you. The Doctor's think that they know it all. You can only just sit there and shake your head, and think to yourself, no, no, no, your listening to me, look at me do I look well to you? One Doctor I went to see (with my Husband, as I can't drive anymore) was my regular one, and I said to him, are you my Doctor? he looked at me as if I had grown two heads, and said 'well yes of course I am', my reply was this 'your slowly killing me, look at me, do I look well? can you see my eyes and see how tired I am? where is my hair, can you see it?' My Husband also tried to explain as well, it was a flat out no, your fine.!!!

[UrsaP in reply to SantaMonica2002]

Horrendous! Perhaps we should all get together and sue the NHS for negligence!

[greygoose in reply to UrsaP]

It's what they learn in med school. They do one afternoon only on the whole of the endocrine system, so you can imagine they don't learn much about the thyroid itself.

And, they are taught in med school that they are the elite, superior to their patients, who are all stupid and liars. They are taught not to listen to their patients, but look at the blood test results on the screen. You don't actually have an appointment with your doctor, you have an appointment with his PC! And, then, they are taught how to prescribe drugs. Thyroid hormones are not drugs, so there's not much profit in them.

So, there you have your answer : money. What they learn in med school is controlled by Big Pharma, and it's not in Big Pharma's interests for us to get well. They make a fortune out of treating our symptoms. Big Pharma doesn't make cures, it makes return customers.

The thing that is really upsetting is that most doctors don't have the power to think for themselves, to reason, to use logic. What they learn in med school is sacred, and not to be questioned. That's the sort of people that seem to be attracted to medicine, and the others don't last long, anyway. So, goodness knows what the solution is, except to topple Big Pharma. But then...

[UrsaP in reply to greygoose]

It really doesn't bode well for the future of medicine does it? When as you say GP's are not looking to further their own knowledge and understanding through experiences. I.e. the patient in front of them.

I agree with you they prefer to just go by a book...how many times in recent years have we all seen Dr's jump up a pick a book up of the shelf to refer to - rather than actually look at us the patients to see what is going on?

Money makes the world go around!!!

[greygoose in reply to UrsaP]

I don't wish to be a gloom-monger, but I can't see anything at the moment, that bodes well for the future.

[SantaMonica2002 in reply to greygoose]

Apart from what you said yesterday Grey, to hell with them and self medicate. Steer your own ship. No choice otherwise is there

[greygoose in reply to SantaMonica2002]

I'm afraid not! Good for you!

[SlowDragon Ambassador]

Do you know if your thyroid antibodies have fallen since going gluten free?

Isabella Wentz - The Thyroid Pharmacist has lots of info on diet related intolerance issues in Hashimoto's.

All soya and Soya lecithin can be an issue. As can nightshades (potatoes, tomatoes, peppers) or dairy.

Personally I noticed improvement when I also cut out soya lecithin - annoying as it is in almost all chocolate.

[SantaMonica2002 in reply to SlowDragon]

Thanks slowdragon. Guess you can tell I'm at the end of my tether. I make my own bread, eat lettuce, never been a fan of chocolate, so I'm OK on that front. I buy gluten free pasta (costs a bomb though) and that is basically it. I have tea with no milk...yuk..and so far, no changes in my antibodies as far as I'm aware, however, I wasn't tested for it, so I don't really know. I'll get that checked.

[humanbean]

Regarding the restless legs, there is a possibility that magnesium may help, as greygoose said.

Another possibility is low potassium, but supplementing that is not recommended - instead people should eat foods that are rich in potassium - just google it, there are links by the thousand on the web about potassium-rich foods.

Another very big contributor to restless legs is low iron. But that is awkward since your ferritin (a measure of your iron stores) is already over the range and so you must not supplement iron. Excess iron is poisonous.

There is a possibility that your high ferritin is caused by Anaemia of Chronic Disease, also known as Anaemia of Inflammatory Response. This is described here :

irondisorders.org/anemia-of...

If you improve your nutrient levels and thyroid hormones to optimal (ignore ferritin and iron for now) you may find your ferritin levels drop back into range.

Improving the condition of the gut will help as well.

[SantaMonica2002 in reply to humanbean]

Thank you, I've just been reading your link. Improvement of the gut, I think that has severe room for improvement. I have to take a large quantity of laxatives to make me go, shall we say. This I put down to a slow digestive tract, because of the MS. See how closely they're related? I hope your right, I just got to get my levels in the upper 2/3 of the range, and what these Doctors are telling me. It's like knocking on wood.

[humanbean in reply to SantaMonica2002]

Do you eat gluten? Lots of us get benefits from giving it up, even if a coeliac test has come back negative. It helps lots of people with or without autoimmune hypothyroidism.

I don't have coeliac disease and I don't have autoimmune hypothyroidism either. And yet giving up gluten gave me lots of benefits. For a start I don't stagger and/or fall over nearly as much as I used to. I think I have a condition called gluten ataxia.

en.wikipedia.org/wiki/Ataxi...

[SantaMonica2002 in reply to humanbean]

Yes I am gluten free, at least I hope I am. OK, perhaps I do cheat now and again, but not often, once a week I may put a tiny drop of milk in my tea on some days. Thank you for the link, I will read it through now. When I fall over, I do it in style I can tell you. I've had concussion, Hospital. Then I fell over into a fire and couldn't get up, third degree burns up my arm....you name it, I've done it.

[humanbean in reply to SantaMonica2002]

How awful! That must be terrifying!

Do you have a community alarm that will get you help if you need it and can't call for help? It might be worth considering if you haven't.

[SantaMonica2002 in reply to humanbean]

The only one I have is my Husband and Son! I know the type you mean though, my Grandmother used to have the same. That is something I've not heard that is available here I wish I had one.

[humanbean in reply to SantaMonica2002]

I don't know where you live. But would it be possible to set up some kind of system privately, with your husband and son getting alerted if necessary.

amazon.co.uk/SureSafe-Alarm...

Obviously that system is designed with the UK in mind. I have no idea if it will work elsewhere.