New here & newly diagnosed with hypothyroid - Thyroid UK

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New here & newly diagnosed with hypothyroid

rvogel24 profile image
55 Replies

Hello everyone,

I'm new to this site and am newly diagnosed with Hypothyroidism, even tho my TSH levels were only at a 5.10 (not sure if being a redhead makes me more sensitive to the symptoms, as I've heard it is possible) but my Dr. put me on 25mcg of Levothyroxine. I have also been prescribed 40mg of Prozac for anxiety, 20mg of Adderall for ADHD, estradiol for menopause. I went my no medications to needing all these within 2 months! I have been trying to read articles pertaining to hypothyroid and what I can do to help improve my health, such as supplementing with certain vitamins & minerals. It's nice to have this site to be able to ask questions and learn different things :)

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rvogel24
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Clutter profile image
Clutter

Welcome to the forum, Rvogel.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrogen.

It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose. Symptoms may lag behind good biochemistry by several months.

You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

We don't advise supplementing without first testing to see whether you need to. Hypothyroid patients are often low/deficient in ferritin, vitamin D, B12 and folate so ask your GP to test. Always ask for your blood test results and lab ref ranges (the figures in brackets after results) and post them in a new question for advice.

rvogel24 profile image
rvogel24 in reply toClutter

If I remember right, my TSH was slightly elevated and my T4 was slightly low, but I'll read that link you sent :) The last time I had my TSH tested was about 6 wks after starting the L-thyroxine and it was 3.75. Thanks for the info about when it's best to take what meds before or after the thyroid med and how long. The Dr. and pharmacist aren't always good at informing ppl of that.

Clutter profile image
Clutter in reply torvogel24

Rvogel24,

If TSH was 3.75 you need a dose increase.

rvogel24 profile image
rvogel24 in reply toClutter

Really? So what is the normal range, because according to Mayo, it's 0.30 - 5 uIU.ml. I've been wondering if I needed another blood draw because I've been so tired again the last two weeks but my Dr. thinks that it's due to the Prozac. I was on 60mg and he had me lower it to 40mg. I've also been wondering about how likely is it, that being in menopause has brought this all on and will it go away once I'm post-menopause? and why is it like pulling teeth to get a blood draw for T3? they say they don't draw for that or T4 unless your TSH levels are elevated.

Clutter profile image
Clutter in reply torvogel24

Rvogel24,

You need to use the range which comes with your results because ranges vary between labs.

TSH 3.75 is within normal range but it isn't optimal. Most people will feel better with TSH lower say 0.30 - 1.0 which are also within range.

NHS doesn't usually test for FT3 unless TSH is <0.03 because they are looking for high FT3 in hyperthyroid patients not low FT3 in hypothyroid patients. It's possible that TSH 3.75 is flogging your thyroid to produce T3 anyway so FT3 may be quite good at the moment.

Menopause is a trigger for hypothyroidism. Once the thyroid has started failing it is very unlikely it will recover and you should accept that you will need Levothyroxine daily for the rest of your life.

rvogel24 profile image
rvogel24 in reply toClutter

Ok, well thank you for all the info! :) and crap, I was hoping it would get better once I was thru menopause Lol ... it sucks getting old! hahaha (turning 50 this year!)

Clutter profile image
Clutter in reply torvogel24

Rvogel24,

You haven't started getting old yet. It does get better once you are on the right Levothyroxine dose but it can take a while to optimise it. Then you just have the menopause challenge to cope with (I roll eyes at 'just').

Bonniet51 profile image
Bonniet51 in reply torvogel24

Try to get it right at 1. You don't want to go too low or you'll end up hyperthyroid and all new symptoms will start. It's like playing Russian roulette.

rvogel24 profile image
rvogel24 in reply toBonniet51

ok Thanks! good to know!

puncturedbicycle profile image
puncturedbicycle in reply torvogel24

I don't exactly disagree w Bonniet51 as such but it's impossible to say that if you get your tsh exactly at 1 that everything else will be good but that you'll go hyper under 1. The really important thing is that your t3 and t4 are robust and you feel well. Some of us feel well around 1 but to get my t3 in the upper part of the range my tsh has to be low, well under 1, that's just the way it is when you take t3 (incl ndt).

If your tsh is under 1 and your t3 is above range and/or you feel overmedicated and/or your pulse/temp/gut are overactive then you must reduce your meds. It is a very individual matter.

Generally 25 is a starting dose for elderly people or heart patients, so you are almost certainly unnecessarily undermedicated. Ensure your doc doesn't leave you there for long. You need a blood test at6-8wks and keep an eye on your results. You will certainly need a dose increase barring some spontaneous increased thyroid activity.

rvogel24 profile image
rvogel24 in reply topuncturedbicycle

Ok, Thanks! I was wondering if my dose shouldn't be more. The way my doctor made it seem was that since he felt that my TSH was only up a little bit (5.10 and the range are 0.2-4.20) and that maybe I just need to be on a low dose. At the end of January, my TSH was 3.75. I hate having to ask my Dr. to raise my meds cuz it makes me feel like he's going to think I'm a hypochondriac Lol Shouldn't the Dr.s know enough to raise the meds?! I've mentioned still being tired and he seems to act confused as to why and just assumes that it's the Prozac making me tired.

puncturedbicycle profile image
puncturedbicycle in reply torvogel24

Uh, yeah he should know!

Idk why they don't, it's a scandal. I feel like 90% of the people who come to this forum because they don't feel well on their meds are undermedicated.

I think you're in the US so this may not help you but a bigwig endocrinologist in the UK wrote an article in a professional magazine saying how uat should be treated and it sometimes helps us get better treatment in the UK. If you're interested you can email Louise and ask for the Pulse article: louise.roberts@thyroiduk.org.uk

rvogel24 profile image
rvogel24 in reply topuncturedbicycle

Yes I'm from the US, and yes the administrator already suggested to email her and ask for that article, so I did :)

puncturedbicycle profile image
puncturedbicycle in reply torvogel24

Sorry, this thread is crazy long. :-) I thought I read upthread but I must have missed it.

rvogel24 profile image
rvogel24 in reply topuncturedbicycle

Lol that's ok, and yes it has gotten long :) Oh, I have another question, which is better, taking a super B-Complex vitamin that contains all the B vitamins and Vit C, folate, &biotin, or to take the B vitamins separately?

Angel_of_the_North profile image
Angel_of_the_North in reply torvogel24

Well, if you consider that the majorty of healthy peoplel have TSH between 1 and 1.5 and only a very, very few have TSH over about 3.5, statistically anyone at the top of the range is unlikely to be healthy. Do GPs now that? probaly not as they don't a) understand stats and b) have never seen the distribution graph c) prefer to treat a blood test result on a computer than a person. If you were properly treated you probaly woudn't need any ADs (but the doctor gets paid more for prescribing them than for prescribing thyroxine) and also if you are zoned out on ADs, you won't be so much trouble!

rvogel24 profile image
rvogel24 in reply toAngel_of_the_North

Yes, I feel like just because my TSH level is w/in the "Normal" range, but at the high end (3.75) that my Doctor figures it's ok and won't bother to up my L-thyroxine, he was skeptical about giving me anything to start with when my TSH level was at 5.10 and the end range was 4.20

goodcrafternoon profile image
goodcrafternoon

Hi! I am fairly new, too! 5.10 is not far out, so 25 sounds about right, that's what I take. 40mg is a high dose of Prozac! I have been instructed to take 20 daily, but in Winter I self medicate and take 30. Thyroid is thyroid and there is pretty much nothing you can take to change that, just Thyroxine. Unless you want to risk going down the Herbal route and they may supply you with a very strong mix of seaweed (tried it once), but you can't regulate the levels, so it's very tricky. Under active Thyroids have to be treated with Thyroxine. They tend to "go wrong" in women, later in life - that's the norm - although my daughters failed at age 10 - that's rare.

Take a multi vitamin, inc 100% RDA Iron, and Vitamin D. Buy decent Vitamin D from a company like Pure Pharma. Hope that helps.

rvogel24 profile image
rvogel24 in reply togoodcrafternoon

I'm in nursing school to become an RN, and my anxiety got so out of hand I was becoming symptomatic premature ventricle contractions & extreme fatigue (which could have also been caused by being hypothyroid). So that is the reason that I am on 40mg of Prozac, I was on 60mg but since getting the Adderall, my Dr. told me to lower the Prozac because I was feeling increasingly tired! I actually take my vitamins separately instead of using a multi-vitamin, not sure if that matters or not tho. As far as the Vitamin D, my Dr. had told me to take a calcium pill (600mg) that also contains Vit. D3 (800 IU).

SeasideSusie profile image
SeasideSusieRemembering in reply torvogel24

rvogel24 Please see my reply to goodcrafternoon regarding multivitamins and the need for testing vits and mins and supplementing what is necessary.

Did you GP test your calcium before prescribing the calcium/D3 supplement? It's only necessary to take calcium if you're deficient, D3 aids absorption of calcium from food (details in post to goodcrafternoon). Your GP should be keeping an eye on your calcium level.

rvogel24 profile image
rvogel24 in reply toSeasideSusie

No, I didn't have a blood test for the calcium before being told to take Ca w/Vit D. He based it off of my age (about to be 50) and that I am a smoker, because apparently smoking can deplete your calcium. and yes, I know, I need to quit, and I've been working at that and have cut back quite a bit! Now if I can just get my husband to quit also :) We don't smoke in the house so that is good!

SeasideSusie profile image
SeasideSusieRemembering in reply torvogel24

I would ask your GP to test your calcium level, it's foolish of him to prescribe that supplement without checking your level, and he should be keeping an eye on it.

chriskresser.com/calcium-su...

rvogel24 profile image
rvogel24 in reply toSeasideSusie

Ok, I went back into my medical chart online and looked up my lab results as far back as January 2016. So in March 2016 my Calcium was 8.9mg/dl (range is 8.6-10.3), I haven't been tested since then. Also in March 2016 my sodium was 140 (135-145), Chloride 103 (98-107), potassium 4.3 (3.6-5.2), glucose fasting 91 (70-99).

Also, I see that my clinic had changed reference ranges for the TSH when it went from Fairview owned to Mayo owned. So if you went by the values they have today, I've had hypothyroidism since 2009 but just got put on meds in Dec 2016! Oh and I've only been tested for T4 back in Sept. 2016 and it was 0.85 ng/dl (low) range is 0.90ng/dl - 1.70ng/dl.

The only thing I've been tested on recently, like at the end of January 2017, was the TSH

SeasideSusie profile image
SeasideSusieRemembering in reply torvogel24

Well, your calcium was low in range when tested. I would ask for it to be tested again, and for your GP to keep an eye on it whilst supplementing with the calcium/d3.

By the way, if your Vit D was low, 800iu won't help much, that's barely a maintenance dose for someone with a decent level.

Are you in the UK? If so the recommended level is 100-150nmol/L. If the unit of measurement is ng/ml then the recommended level is 40-60.

And you need K2-MK7 and magnesium when taking D3

vitamindcouncil.org/about-v...

naturalnews.com/046401_magn...

Calcium, D3, magnesium and iron supplements all must be taken four hours away from thyroid meds.

If ranges have changed, today's range is not appropriate for test results taken previously with a different range. It's where in that particular range you fall, they're not interchangeable.

TSH should be 1 or below and FT4 and FT3 in the upper part of their ranges if that is where you feel well. Meds should be increased/levels tested every 6-8 weeks until you feel well.

rvogel24 profile image
rvogel24 in reply toSeasideSusie

No, I live in Minnesota of the United States. Ok well, when I go in for Dr. appt. on April 3rd, I'll just ask for a blood draw to have all of these tested! and yes I've just now learned about the time space between other meds/supplements and L-thyroxine. Good grief!! I can't afford to have my health and brain function be compromised right now while I'm in nursing school and trying to get good grades!!

puncturedbicycle profile image
puncturedbicycle in reply torvogel24

rvogel24 adderall can also exacerbate anxiety, so you're taking two drugs (+prozac) which can cause anxiety. They can also relieve it(!) but if one is making it worse so you're taking more of the other to make it better you can see how you can get into a cycle.

rvogel24 profile image
rvogel24 in reply topuncturedbicycle

The Prozac actually has helped with my anxiety and the Adderall has helped me be more settled down so I can sit and actually study for more than 5 or 10 min Lol and I'm able to focus better and absorb the info

puncturedbicycle profile image
puncturedbicycle in reply torvogel24

That's good, I found P helpful too, but a lot of docs seem to prescribe it for anxiety and a lot of people find it ramps it up. It also made me sleepy rather than agitated.

rvogel24 profile image
rvogel24 in reply topuncturedbicycle

Yep same here, but I also wonder now if I shouldn't be on a higher L-thyroxine dose

puncturedbicycle profile image
puncturedbicycle in reply torvogel24

If I may be permitted to generalise that is almost certainly true. :-)

Angel_of_the_North profile image
Angel_of_the_North in reply torvogel24

Very unlikley that you need extra calcium or that 800iu D3 will do anything. Generally, a maintenance winter dose of D3 is 2000iu a day for an adult and should be taken with magnesium and K2, not calcium.

SeasideSusie profile image
SeasideSusieRemembering in reply togoodcrafternoon

I'm sorry to disagree with you goodcrafternoon but 5.10 is a very long way out and a dose of 25mcg is just a starter dose, usually reserved for children and elderly people. A lot of people are started on 50mcg with increases every 6-8 weeks until they feel well. An average dose is around 150mcg and many people need more.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges if that is where the patient feels well and symptoms abate.

There are other treatments for Hypothyroidism including T3 (liothyronine) if conversion of T4 to T3 is poor and an endo suggests it and the GP surgery willing to fund it. Then there is Natural dessicated thyroid (NDT) made from pig's thyroid which was the original treatment before synthetic thyroxine. NDT is rarely prescribed on the UK.

'Seaweed', which is basically iodine, would never be a good idea because of a patient has autoimmune thyroid disease it can cause antibodies to flare up and intensify the attacks. Iodine level should always be tested before supplementing with iodine and it should only be taken under the guidance of an experienced practioner.

Your multivitamin is not a good idea, they tend to contain not enough of anything to help, and frequently the cheapest and wrong form of ingredients. Multis containing iron, calcium or iodine should be avoided as we shouldn't take any of those unless tested and know that we have a deficiency. Iron will negate the effect of the other ingredients as it affects their absorption.

It's best to test and then supplement known deficiencies which is why we always suggest the following be tested:

Vit D

B12

Folate

Ferritin

I wonder what dose of D3 you are taking and what your level is? D3 is fat soluble so excess gets stored in the body. It's important not to reach toxicity level and should be retested once or twice a year. The recommended level is 100-150nmol/L.

Did you know that Vit D has important co-factors needed when supplementing? K2-MK7 and magnesium are very important. D3 aids the absorption of calcium from food and K2-MK7 directs it to bones and teeth where it is needed rather than arteries and soft tissues where it can build up and cause problems like calcification of arteries and kidney stones.

goodcrafternoon profile image
goodcrafternoon in reply toSeasideSusie

Crikey. I was comparing it to my daughters result of 75 - when she was first diagnosed. She only takes 150. Mine was 6 so I take just 25.

SeasideSusie profile image
SeasideSusieRemembering in reply togoodcrafternoon

Did you get retested 6-8 weeks after starting Levo? What is your TSH now, and what about FT4 and FT3, they're all important, it's not all about TSH or if it's in range, it's about where in the range and getting the right dose of Levo for us to feel well.

If you are still symptomatic (and your daughter) then you're not optimally medicated.

goodcrafternoon profile image
goodcrafternoon in reply toSeasideSusie

We've been on Thyroxine since April 2001 but have only just found a decent Thyroid specialist - up to now our Dr couldn't care less. It was only because we went private about something else and it came up.

SeasideSusie profile image
SeasideSusieRemembering in reply togoodcrafternoon

goodcrafternoon - are you saying you've been on 25mcg levo since 2001, weren't retested 6-8 weeks after starting, and not even had annual thyroid function tests?

You really need a new GP.

Please take a look around ThyroidUK's main website

thyroiduk.org.uk/tuk/index....

If you get a Thyroid Plus Eleven test done with Blue Horizon (see testing page thyroiduk.org.uk/tuk/testin... ) it will cost £99, post the results on here and I promise you that you will get more advice, free of charge, from knowledgeable members than you've ever had from your GP, and it's going to be a lot cheaper than your private specialist.

goodcrafternoon profile image
goodcrafternoon in reply toSeasideSusie

Sorry no - we've had blood tests twice yearly with varying amounts of meds but ultimately the Dr doesn't care.

SeasideSusie profile image
SeasideSusieRemembering in reply togoodcrafternoon

Ask for a print out of your results, latest ones will do, or however far back they will let you have. It is your legal right under the Data Protection Act 1998 so they can't refuse. They may make a small charge for paper and ink, if they want to charge £10 then you are entitled to everything they hold electronically so you might as well get that.

Post your results on here (with reference ranges) or do a private test. Members will help.

goodcrafternoon profile image
goodcrafternoon in reply toSeasideSusie

I was just passing on vit info from my thyroid specialist Dr Spring in Kingston who recommended the vitamins etc. He esp likes to recommend a D supplement apparently. He has recommended a swap from just T4 to 3 and 4 but our Dr will not prescribe so we have to purchase it ourselves from his recommended source in London Uk.

SeasideSusie profile image
SeasideSusieRemembering in reply togoodcrafternoon

I hope he tests Vit D so that he can recommend the correct dose of D3. And I hope he knows about the important co-factors and re-testing once or twice a year so he can recommend those as well.

goodcrafternoon profile image
goodcrafternoon in reply toSeasideSusie

Are you in the U.K. Please? A visit and blood test costs us £480 a time so I'm hoping he keeps it down to once or twice a year. Shame our usual Dr doesn't care to help out.

SeasideSusie profile image
SeasideSusieRemembering in reply togoodcrafternoon

Yes, I'm in the UK. You can get a Vit D test for £28 with City Assays which is the laboratory at the NHS City Hospital in Birmingham who offer the test to the public. It is a very simple fingerprick blood spot test

vitamindtest.org.uk/index.html

Many members here get thyroid and vitamin and mineral tests done through a couple of labs who work with Thyroid UK and offer private tests at very reasonable prices. Details here:

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

Very few NHS GPs now offer Vit D testing.

puncturedbicycle profile image
puncturedbicycle in reply togoodcrafternoon

goodcrafternoon will your gp not refer you?? Dr Spring sees nhs patients as well as private.

rvogel24 profile image
rvogel24 in reply toSeasideSusie

Wow! Thanks for the info!! When I go see the Dr. that keeps track of my meds, I'll ask him about the Vit. D3 and also if I can have a blood draw to recheck my TSH level, and if it's still not down around 1, I'll ask him if he thinks I should increase my dose. I'll also have the vitamins/minerals that you listed checked also in the blood draw. I've been taking 500mcg of B12 the sublingual dots every day. I also take 65mg Iron (Ferrous Sulfate) but every other day. The only one I don't have is the folate.

SeasideSusie profile image
SeasideSusieRemembering in reply torvogel24

Don't just ask for TSH, ask for FT4 as well, plus FT3 if he'll do it, and thyroid antibodies to rule out (or in) autoimmune thyroid disease.

You shouldn't supplement iron unless you've been tested and know you need it. Too much iron is as bad as too little.

Your B12 test will show that you are supplementing. For a baseline you need to be off it for 4-5 months. But testing when supplementing will show if you are taking enough. B12 should be at the very top of the range, even 900-1000.

Folate and B12 work together. Folate should be at least half way through it's range.

Ferritin must be at least 70 for thyroid hormone to work properly, best for females is 100-130.

Vit D is recommended to be 100-150nmol/L.

Don't expect your doctor to know any of this, they're not taught nutrition.

rvogel24 profile image
rvogel24 in reply toSeasideSusie

Thank you for all the info!! maybe I should also see a nutritionist Lol ... I am bad at being consistent with taking my vitamins or minerals!! I'm just trying to get used to taking my prescribed meds every day at the right times! But I've been doing good so far. As far as the vitamin/mineral pills, I don't always take them every day because I don't want to "over do" it. But yes, I will ask him to test for all those levels, then at least I'll know! The one thing I don't think I've had tested are the antibodies, which I really should since auto-immune diseases run in my family. (mother w/RA & 2 sisters,1 Crohn's & 1 hypothyroid)

Bonniet51 profile image
Bonniet51

Get off the Levo and get on T3 and T4!! all the other meds are just a cover up for whats really wrong. Dr's. prescribe too much medication to cover up problems and not fix them. It's easier that way plus, pharmaceutical companies rely on you taking everything under the sun., that's how they get richer and richer and you get sicker and sicker.

puncturedbicycle profile image
puncturedbicycle in reply toBonniet51

Levo = t4. Do you mean t3+r4 as in ndt? They're all pharmaceutical products. :-)

Bonniet51 profile image
Bonniet51 in reply topuncturedbicycle

T3 & T4 as in Natural thyroid medication that includes both, not the synthetic that only contains T4. I have been on NDT medication for 30+ years. R4 is reverse T4, something different. T3 & T4 is found in Armour, Naturthroid, Westhroid Pure. All made from a pigs thyroid. Sound gross but, it works much better having both. I, like many others, are not able to convert T4 into T3 so, taking both assures your body gets both. A blood test will either show you don't need both, that your body is able to convert or it will show you actually need to take both.

puncturedbicycle profile image
puncturedbicycle in reply toBonniet51

My bloods show I convert just fine but for whatever mysterious reason I am very symptomatic on levo alone so I add t3. Without it I bloat up like a sausage, am constipated and lose my hair.

I didn't get on w ndt (maybe the dose was never high enough, who knows) but my mum has used Armour for years. I think there is a genetic reason for my situation somewhere in the mix but it hasn't been identified yet.

Angel_of_the_North profile image
Angel_of_the_North in reply toBonniet51

You can also take T4 and T3 combo if you don't/can't get NDT or it doesn't suit. I don't think reverse T4 exists. Reverse T3, yes.

rvogel24 profile image
rvogel24

I'm beginning to wonder if I shouldn't find a thyroid specialist to go see instead of leaving everything up to my GP. Lol

Bonniet51 profile image
Bonniet51 in reply torvogel24

Yes, you need an endocrinologist. They specialize in this field.

puncturedbicycle profile image
puncturedbicycle

May I ask is the Prozac helping your anxiety? It really is not generally considered the best go-to for anxiety as anxiety is one of the potential side effects.

I am not a fortune teller :-) but I predict you will find you're wildly undermedicated and as soon as you're on the right dose of the right meds you'll see a drastic improvement in your anxiety.

Zoe41thyroid profile image
Zoe41thyroid

It's worth looking at 'The Thyroid Secret' if you look it up online you will find the Dr that wrote it. You can read the book or buy it to watch. It is remarkable but talks about improving symptoms through diet along with much more. I started dropping gluten, a massive improvement and my thyroxine was lowered. Honestly it is really incredible. Worth reading or watching.

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