At my wits end! Any advice would be much apprec... - Thyroid UK

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At my wits end! Any advice would be much appreciated.

LadyLovely84 profile image
22 Replies

Hello, I’m 34 and have had numerous health problems since childhood. I was diagnosed with ME and POTS as a teenager and regularly struggle with Anemia and Low Blood Pressure. I’m constantly exhausted, dizzy and depressed with achy bones, heavy periods and severe PMS. I’ve gained 2 stone over the past few years despite never going over 1,400 calories a day and started to get racing heartbeat after meals, coldness/shivering and also hair loss. My mother has Hypothyroid and Osteoporosis and so I recognised some symptoms. Through the GP my TSH tests came through normal many times but I still felt as though I had a lot of hypo symptoms.

I got some tests done through medichecks with showed normal TSH and T4 but low RT3, low ferritin, normal Vit D and very high B12.

I decided to go to Dr P and he said he thought I had Adrenaline Insufficiency, Hypothyroidism and perhaps an issue with my sex hormones and asked me to have further tests done by Genova.

The results came back with Urine Thyroid being T4 4.83, T3 1.61 and Ratio 33.33. T3 has been flagged up in red as low but it states normal range begins at 0.61 and I’m 1.61...can anyone explain?!

One cortisol reading was high in the Adrenal profile. Oestrogen is high at 6.27 and Progesterone low at 18. My periods are usually regular and I have always believed that I ovulate (I show signs) but this month (when the test was taken) my period was 6 days late and the first few days were spotting which has never happened before. I’m especially worried about my fertility as I’d like to have a baby (more than anything!).

Dr P has commented that “Urine Thyroxine is present but it’s not converting to T3 properly as you have hypothyroidism and hypoadrenaline. Continue please as planned.”

Dr P started me on Adrenavive II and Metavive I and I’ve been taking them for around three weeks. I’ll be starting Serenity cream soon too. I’ve been following Slimming World religiously and have gained a further 3lbs much to my dismay. I hate my body at the moment, especially the fat on my stomach and hips and none of my clothes fit. I am sleeping better and had more energy initially but am currently feeling very depressed and anxious about my future. I’ve also noticed since starting the Metavive that the hair on my legs and eyebrows is growing at an alarming rate haha! I’m hoping that’s a sign that my thyroid is improving, my temp is going up slightly and my blood pressure has gone up significantly which is amazing. At the moment though I’m completely exhausted, having constant lower right sided back pain (a new symptom) and what feels like menstrual cramps even though I’m not on my period (and never get menstrual cramps anyway).

Has anyone experienced similar and got any advice please? I’m willing to change diet, lifestyle anything I have too. I don’t eat gluten and have lactose free dairy. I’ve also cut out caffeine now. I’ve massively cut down on chocolate/cake/crisps/biscuits etc. I take Ultra Woman’s MultiVitamin, Agnus Castus, Starflower Oil and Spatone Iron.

Feeling really overwhelmed! There’s so much information out there and some of it is conflicting or confusing.

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LadyLovely84
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SeasideSusie profile image
SeasideSusieRemembering

Ladylovely

Commenting on your urine test only

T3 has been flagged up in red as low but it states normal range begins at 0.61 and I’m 1.61...can anyone explain?!

The units are different now from when I did mine 3 years ago, and then the reference range related to the green part only. I obviously can't attach a picture of my results but to illustrate, the reference range was 800-2,500pmol and my result was 691 and I was in the left hand red part, slightly further to the right of where yours is, so I was classed as below range.

With yours everything seems to have changed and it looks like the range starts on the very left hand side at the left hand edge of the red area and goes to the right hand side at the very edge of the red area. Your result is within that range but not in the optimal green area so it's low.

If you work out the figures percentage wise how far you are through the range, 1.61 is 36% through the range, but that doesn't seem to correlate with where you are on that graphic. With the range being 0.61-3.38, half way through that range is 1.995. That should be half way through the green area by my reckoning. Yet your result is supposed to be 1.61, not that far away from half way through range, and it's plotted in the red area. It does seem strange.

Using the same principle with the T4 result, half way through that range of 1.03-8.24 gives 4.635. Your result is 4.83 and seems to be in the right place, very slightly over half way through the green area.

I think there is something wrong with your T3 result, either the 1.61 is incorrect or it has been plotted wrong on the graphic.

Have you asked Dr P? I know Genova don't deal with the public and if you asked them you would probably be told to consult with your practioner.

LadyLovely84 profile image
LadyLovely84 in reply toSeasideSusie

Thank you Susie! I completely agree with your analysis of the results. Either the figure of 1.61 is wrong or the graph has been plotted incorrectly. I’ve only just got these results from Dr P by post so will write a letter back and ask. I might also call Geneva just to ask who I could raise a query with if I’m allowed to do that.

SlowDragon profile image
SlowDragonAdministrator

Can you add the actual results and ranges on folate, B12, vitamin D and ferritin results from Medichecks

Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies?

Presumably Medichecks tested antibodies and TSH, FT4 and FT3 as well?

Can you add the actual results and ranges of these

LadyLovely84 profile image
LadyLovely84 in reply toSlowDragon

Thanks SlowDragon,

I’ve never been diagnosed with Hashimotos.

Here are all the Medichecks results I have;

TSH 1.68 (0.27 -4.20)

Free Thyroxine 17.20 (12.00 - 22.00)

Free T3. 4.3 (3.10 - 6.80)

Reverse T3 21 (10.00 - 24.00)

Reverse T3 Ratio *13.33* (15.01 - 75.00)

Thyroglobulin Antibody <10 (0.00 - 115.00)

Thyroid Peroxidase Antibodies <9.00 (0.00 - 34.00)

Active B12 - 218.00 (25.10 - 165.00)

Folate (Serum) - 19.98 (2.91 - 50.00)

25 OH Vitamin D - 75.6 (50 - 200)

Inflammation Marker CRP 0.25 (0.00 - 5.00)

Ferritin 28 (13.00 - 150.00)

Dr’s Comments;

“06 Jul 2018

Your thyroid hormones are normal.

Your FT3/rT3 ratio is marginally low which could suggest that you are not getting sufficient free triiodothyronine (FT3) into your cells. Other conditions can cause difficulties converting thyroxine to T3 and cause rT3 to rise. These include COPD, liver disease, diabetes, heart failure and low calorie diets. If you are experiencing difficulties with any of these then I suggest you discuss this further with your GP.

There is currently little scientific research into the FT3/rT3 ratio, but some experts believe that this could lead to symptoms of hypothyroidism (slow metabolism) even though your thyroid hormones are at normal levels.

You may wish to discuss these results with your GP although you should note that it may be difficult to get advice and treatment for elevated rT3 or an abnormal ratio through conventional channels.

Your thyroid hormones are normal.

You have high levels of vitamin B12, if you are taking a B12 supplement then I recommend decreasing your dose.

Your levels of folate and vitamin D are normal.

Your CRP level is normal, suggesting low levels of inflammation within the body.

Your ferritin is toward the lower end of normal. I recommend increasing your dietary iron intake (green leafy vegetables). Orange juice will help you absorb dietary iron better. Over the counter lysine supplements can also help with this.”

SlowDragon profile image
SlowDragonAdministrator in reply toLadyLovely84

Ferritin is too low , as others have said.

Eating liver or liver pate once a week should help improve levels. Aiming to be around 70

Better You have recently started producing an iron mouth spray. Many people struggle with iron supplements

Important to retest iron if supplementing

Vitamin D may be better a little higher, around 100nmol,

DotLeeds profile image
DotLeeds

If you reduce calories when your body is struggling with medical problems, you will feel really aweful. Concentrate on eating well, sufficient protein, sufficient carbohydrates and keep track of vitamin and minerals in your food rather than calories.

LadyLovely84 profile image
LadyLovely84 in reply toDotLeeds

Thanks Dot, I think I’m just terrified about more weight gain. In the industry I work in it’s important to be a healthy weight and I’ve gained two stone on 1,400 calories and am now medically overweight so I’m scared about not tracking calories I suppose.

penny profile image
penny in reply toLadyLovely84

My experience has been that if my thyroid hormones are not optimal I cannot lose weight. Before being diagnosed hypothyroid I tried to lose my gained 42lbs but was unable to shift anything (except money) and gained a few pounds every month. Once diagnosed and on NDT 14lbs of fat melted off in a month. The rest of the superfluous weight I managed to get rid of following the 5:2 diet. My levels of medication are crucial to my maintaining a reasonable body weight.

It's a bad idea to eat only 1400 calories a day, women require 2000 calories each day.

Eat a balanced diet mostly organic, with plenty of vegetables and a little meat. Use nuts and fruit each day to fill yourself up. Buy wholemeal organic bread, eggs, milk, cheese , as these are better for you and don't contain chemical sprays or too many antibiotics.

What exercise do you do?

LadyLovely84 profile image
LadyLovely84 in reply to

Hi Bunny,

I struggle with feeling exhausted so I’m often quite sedentary but do around 2-4 hours of figure skating per week, yoga most days, walking, Pilates and hula hooping. I often do dance or aerobic/HITT videos on YouTube. I used to swim but had to give up as I was having problems due to the chlorine. I also cannot lift weights for medical reasons.

I have Coeliac Disease so no gluten for me and I stick to lactose free dairy as this helps. I strictly avoid Soy as it makes PMS worse. I’m on a strict budget which is very stretched due to the supplements I’m buying and money for private tests/consultations so a lot of Organic produce is out of reach for me but I do take the skins off of everything due to the pesticides.

I eat a LOT of vegetables but this also triggers bloating and severe gastric pain which the GP puts down to IBS.

Typical days diet would be;

2 slices BFree Gluten Free Brown Bread with butter and either an egg or a banana. Or 40g gluten free porridge with some fruit on top (a banana, grated apple or berries).

Snack; Decaf lactose free coffee and piece of fruit or one square of chocolate.

Lunch; Vegetable based soup. Today Butternut Squash and Lentil. All homemade. I frequently have chicken soup made with the stock from boiling up the carcass and leeks, onion, carrots, lentils or split peas.

Dinner; Prawn Vegetable Fried Rice. Again homemade with 1 tsp stir fry oil, 50g brown rice, spring onion, mushroom, mangetout, carrot, garlic, egg and ginger and garlic, small amount of tamari. Other dinners would be things like homemade Chicken Curry, Chilli with 5%fat beef mince, Jacket Potato and tuna or 40g cheese filling, fish with veg and potatoes always accompany meals with a 1/3rd to a 1/2 plate of salad or veg.

A second snack before bed would be something like one of the following; an orange or fat free Greek yogurt, two oatcakes with peanut butter or, a couple of squares of chocolate if I didn’t have them earlier in the day.

Drink wise I’d have decaf tea, one decaf coffee and water. Often one glass of a diet drink or flavoured sparkling water. I always have 300ml lactose free milk each day.

in reply toLadyLovely84

Hi I am about to view a new online seminar on IBS for my partner who has this. I am lucky and don't have any other issues other than no thyroid and old age creeping up.

If there is anything interesting I will do a post on it later next week when I have watched all the programme.

Foxtrot89 profile image
Foxtrot89 in reply toLadyLovely84

“I eat a LOT of vegetables but this also triggers bloating and severe gastric pain which the GP puts down to IBS.”

Have you ever heard of a low-FODMAP diet? I was getting extreme bloating which I thought was random but eventually narrowed it down to being certain vegetables (amongst other things). A lot of cases of IBS are in fact something called SIBO, which is small intestine bacterial overgrowth. Basically it just means there’s more bacteria in the bits of your intestine where there should be less. When there’s more there certain foods can hang around too long and ferment in your gut, feeding the bacteria and cause gas, bloating, anxiety, raised heart rate, and many other reactions after eating.

I haven’t been tested for SIBO but all the foods and symptoms matched up so I tried the low-FODMAP diet and within a week all my bloating and food related symptoms were gone.

I’m still on the low-FODMAP at the moment but it’s a temporary fix. The plan is that you restrict those foods so that the bacteria numbers return to normal and then you can slowly phase the high-FODMAP foods back in.

Even if it isn’t SIBO the diet is proven to help simple IBS.

I hope this helps you!

You sound very active to me!

LadyLovely84 profile image
LadyLovely84 in reply to

Thanks but it only averages out to about 30/45 mins per day per week and the rest of the time I’m a zombie on the sofa. Eyes are closing as I’m typing this and it’s not even 12pm.

You’re doing about 30/45 mins per day more than me so I think you’re amazing!

LadyLovely84 profile image
LadyLovely84 in reply to

Thanks SewinMin. I really have to force myself to do anything but know I have to do it for my health.

Am actually having to go back to bed now as I’m just zombified and can’t stay awake.

Finola profile image
Finola

Hi lovely,

Your ferritin is too low, not just a bit; for your body to utilize thyroid hormones ferritin needs to be up around 90. Your reading of 28 would cause problems for you. You know to take iron at least four hours away from thyroid meds and with some vit c to aid absorption.

As far as your diet is concerned possibly why not try a version of the paleo diet, just protein and vegetables and some healthy fats like olive oil or coconut oil. No fruit, grains or spuds. Veg like cabbage and onions can cause bloating problems so cut those out too for 2 or 3 weeks and see how you feel. It seems to me that the calorie cutting isn’t working for you and in fact may be making you more tired and aiding in the weight increase.

In my experience what will improve our health is to keep reading up and educating ourselves, talking to people on this forum and trying things out to see how you feel.

Best wishes to you

Finola

LadyLovely84 profile image
LadyLovely84

Thank you so much Foxtrot and Finola!

I had no idea that the low ferritin could make me feel so ill/affect thyroid function so thanks for telling me! I currently take Spatone (1 sachet) plus my Multivitamin contains iron but I’m wondering if that’s not enough. Prior to this I was taking firstly Ferrous Sulfate for about a year which gave me horrendous loose stools and stomach pain. Then I started taking a ferroglobin supplement which made me feel amazing but contained B12 which is apparently too high so I stopped taking it. I’d been taking that for several months before the medichecks blood test so I can’t imagine how low my ferritin would have been prior to this. I’ve had consistently low ferritin for at least 6 years, maybe more. I’m considering taking two sachets of Spatone and eating liver once a week now.

I did briefly try the low FODMAP diet and it really helped more than any other diet with the bloating and IBS. I stopped because I was advised it was too restrictive and with being Oestrogen Dominant it was felt that I was cutting out too many major foods like legumes and cruciferous vegetables which have a positive impact on xenoestrogens. It’s only a temporary diet though so perhaps I should revisit it? Certainly I feel Aliums and Cauliflower trigger my IBS. Slimming World diet with its 1/3rd “speed food” (ie lots of veg) makes me feel awful IBS wise.

I’ve heard of paleo but never attempted it because it seems so restrictive and I don’t know if I could cope with no fruit, oats or brown rice/gluten free pasta and potatoes! Even for a week! I’ll look into it some more and see if I can summon up the strength and willpower to attempt it.

Thanks so much for all the advice. It’s honestly helping so much and I can’t tell you how much I appreciate it.

JaniceJ7 profile image
JaniceJ7 in reply toLadyLovely84

If your multivitamin contains iron then it is useless. Iron should be taken 4 hrs away from thyroid meds and 2 hrs away from other vitamins. Multivitamins often contain the cheapest version of vitamins which might be in a form that is difficult to be absorbed by the body. Check to find out exactly what vitamins you need and take them individually.

LadyLovely84 profile image
LadyLovely84 in reply toJaniceJ7

Thanks, this MultiVitamin was recommended to me by my GP and I am worse symptom wise when I don’t take it. I’m also not on thyroid medication. Only Adrenavive and Metavive from Dr P and he advised they are safe to take at any time.

LadyLovely84 profile image
LadyLovely84

Just an update;

After doing lots of reading I am CONVINCED I have SIBO. It all makes absolute sense and would explain the extreme digestive symptoms I’ve learned to just live with. It would also explain why my ferritin levels have not gone up in the 5 years since starting iron tablets which in turn explains the slight issues thyroid levels (the rt3 ratio and possible low t3) and weight gain along with hypo symptoms.

My gut has been in a bad way for years and little has helped. Low FODMAP has been one of the only things and once after I was very ill with a gastric infection for which I needed antibiotics I felt the best I ever had in my life (which made no sense!). I now think the antibiotics and not eating much food for a week killed off some of the bad bacteria.

The severe bloating/gas/pain/nausea/IBS type symptoms started at the same time that ferritin results were first flagged up as low. This dates back about 5 years. However I was first diagnosed with IBS aged 9 and have had “flare ups” every few years. I’ve put it down to Candida in the past but SIBO was never mentioned.

I just happen to have a course of Doxycycline which I never took and which is recommended as an antibiotic for treating SIBO. I’m considering taking it as an experiment and then also doing the low FODMAP diet again. In a couple of months I’ll ask for my ferritin to be checked again and see if the levels have gone up.

Feeling much more optimistic!

Foxtrot89 profile image
Foxtrot89 in reply toLadyLovely84

I’m so glad to hear this has helped you! Yes the antibiotics and not really eating for a week funnily enough probably would have helped kill off some of the SIBO.

Some people with severe SIBO have to follow what’s called an “elemental diet” which is a special liquid diet and not eating anything else. I don’t believe it’s recommended for mild cases but if I were you I’d trial gluten free and low FODMAP for 1-3 months.

You say your ferritin is low and won’t rise even with supplements but do you have a full iron profile? If you know both iron and ferritin are low you can supplement with more than a multivitamin and the amount in Spatone (5mg per sachet?)

When I was low iron I took a supplement called Raw iron by Garden of Life. It has 22mg iron and I felt like it brought me back to life! Garden of Life’s Healthy Blood is also amazing. 14mg per capsule so you can take one or two a day depending on how low you are (don’t even think of supplementing iron until you know you’re low, as it’s dangerous). Both these supplements are natural and non irritating on your stomach.

Also beware that sometimes B12 levels can show as high even though you may still have low levels which are available for use. I had high blood levels and tried cutting down but felt SO TIRED after just a few days. It’s apparently typical with the MTHFR genetic mutation (look it up, it’s common and you could have it) that your B12 look high but for some reason be unavailable for your body to actually use.

If I were you I’d concentrate more on eating right and getting everything balanced as your weight should normalise as this happens.

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